Mercifully, where it matters, it is an easy decision.
HG
JD -
I didn’t really have a point with my last three posts, except to add more info to the original poster’s article.
I think that it is good to have ethical discussions, and guidelines. That seems to be what Nuffield was doing. I need to do more reading about the ethics involved in “should we actively euthanize infants with deformities so egregious that without medical intervention they would not survive or with incurable, fatal problems that cause life to be physically painful?” A quick answer would be yes, I think so. First, because it seems merciful to the infant, and perhaps the family/parents. Second, because the resources used to prolong this infant’s life for days or months could be better used to save or improve the lives of infants, kids, adults who are alive and viable.
Bodo
[quote][url=http://www.niams.nih.gov/hi/topics/epidermolysis_bullosa/epidermolysis_bullosa.htm#5]What Are the Symptoms of Epidermolysis Bullosa?
The major sign of all forms of EB is fragile skin that blisters, which can lead to serious complications. For example, blistering areas may become infected, and blisters in the mouth or parts of the gastrointestinal tract may interfere with proper nutrition.
Following is a summary of some of the characteristic signs of various forms of EB.
EB Simplex (EBS)–A generalized form of EBS usually begins with blistering that is evident at birth or shortly afterward. In a localized, mild form called Weber-Cockayne, blisters rarely extend beyond the feet and hands. In some subtypes of EBS, the blisters occur over widespread areas of the body. Other signs may include thickened skin on the palms of the hands and soles of the feet; rough, thickened, or absent fingernails or toenails; and blistering of the soft tissues inside the mouth. Less common signs include growth retardation; blisters in the esophagus; anemia (a reduction in the red blood cells that carry oxygen to all parts of the body); scarring of the skin; and milia, which are small white skin cysts.
Junctional EB (JEB)–This disease is usually severe. In the most serious forms, large, ulcerated blisters on the face, trunk, and legs can be life-threatening due to complicated infections and loss of body fluid that leads to severe dehydration. Survival is also threatened by blisters that affect the esophagus, upper airway, stomach, intestines, and the urogenital system. Other signs found in both severe and mild forms of JEB include rough and thickened or absent fingernails and toenails; a thin appearance to the skin (called atrophic scarring); blisters on the scalp or loss of hair with scarring (scarring alopecia); malnutrition and anemia; growth retardation; involvement of soft tissue inside the mouth and nose; and poorly formed tooth enamel.
Dystrophic EB (DEB)–The dominant and recessive inherited forms of DEB have slightly different symptoms. In some dominant and mild recessive forms, blisters may appear only on the hands, feet, elbows, and knees; nails usually are shaped differently; milia may appear on the skin of the trunk and limbs; and there may be involvement of the soft tissues, especially the esophagus. The more severe recessive form is characterized by blisters over large body surfaces, loss of nails or rough or thick nails, atrophic scarring, milia, itching, anemia, and growth retardation. Severe forms of recessive DEB also may lead to severe eye inflammation with erosion of the cornea (clear covering over the front of the eye), early loss of teeth due to tooth decay, and blistering and scarring inside the mouth and gastrointestinal tract. In most people with this form of EB, some or all the fingers or toes may fuse (pseudosyndactyly). Also, individuals with recessive DEB have a high risk of developing a form of skin cancer called squamous cell carcinoma. It primarily occurs on the hands and feet. The cancer may begin as early as the teenage years. It tends to grow and spread faster in people with EB than in those without the disease[/url].[/quote]
Epidermolysis Bullosa
Anencephaly
Some of the conditions where bioethicists are talking about withholding intensive care in order to prolong life, and I guess euthanasia.
Bodo
Mercifully, where it matters, it is an easy decision.
HG[/quote]
Well, good for you…I guess. Not everyone is so desensitized as you. Taking a life, any kind of life, is never any easy thing. Even if it’s hopeless. Life is 99.99% of the time better than any kind of death. You as a nurse sometimes have to deal with the 0.0001% of the time when death is actually preferable to life…it can’t be an easy decision, mate. I don’t envy you. Your job must be very, very tough. You have to do what must be done, but…I wouldn’t want your job for all the world. It would literally kill me to have to do what you guys have to do in hospitals. I am not disagreeing with what you have to do, because now I understand, with kids born without hearts and brains outside their heads, that these things must be done…I know they have to be done, but…how can you do it and remain a human being looking at yourself in the mirror? Seriously. I couldn’t do it. Too squeamish, I guess.
I’m not certain it’s a matter of being desensitized or not. There are a LOT of variables at play. Ultimately the choice is the parents’.
The financial reprecusions IMHO should be a result of the choice and not a cause. The economic reality would force a valuation on the decision, ie “What is the worth/cost of the child being kept alive?” and “What would be the economic benefit of doing so?”
These are NOT things that should be on a parents’ mind or a Dr. What is best for the patient is. I also do not think it diminishes the value of humanity to effect a truly merciful “killing.” Sometimes doing what is right does not leave one with a sense of accomplishment or absolution.
Heavy shit this is.
To use the easiest possible example, an anacephalic body is not viable. There’s no sensitivity in this issue, it simply is the case.
By the way Quentin, it’s not a nurse’s decision, it’s a medical decision often made with the approval of the family, etc. In other instances, the family can require whatever they like, the fact is, as in the case of an anacephalic baby, they will never get it. Treatment in such a case is usually restricted to ensuring comfort and then waiting for time to take it’s course. The main thing is not intervening to prolong life unnecessarily. It’s actually not that difficult. The hard thing is having to inform family and friends that the damage has been done and there is sod all that can be achieved by intervention.
This is more common than you may realise. Certainly someone with terminal cancer is not about to cop a defibulator should they suddenly drop off the twig. No, you let them go in peace and dignity. Resuscitation, by the way, is a very violent and incredibly intense and frightening process for ALL concerned.
One of the strangest experiences I ever had was when I worked in an operating theatre where we “harvested” the organs from a brain dead policeman. Technically the policeman was still alive as he was wheeled into the theatre. It’s really hard to explain this, without sounding silly, but there is a striking difference between an actual corpse and someone with a pulse and breathing, albeit by respirator. You can tell in a glance. I suspect it is all the tiny movements inherit in pulses and breathing and all the other minor involuntary movements. If you think about it, blood is coursing through your whole body, there has to be some sort of vitality to the scene. I think this is in part the basis for the thinking that there is a soul and it is absent in death. A lifeless body is literally exactly that.
Anyway, this copper had a car accident and basically mushed his brains completely. There was no function evident and he could not breathe on his own. Obviously by the time you’ve taken his heart and lungs, it’s only a simple case of turning off the machines that are supporting these functions and he’s gone forever. Still, while there is breathing and a pulse, there is life.
The difficulty was not in the way “we” nurses and doctors viewed the copper, as in our minds he was technically already dead, rather it was the way his family viewed it. Before he was wheeled in, there always remained a glimmer of hope for some kind of miracle. We, however, knew there was absolutely none and that the best hope was that the cop’s organs could be better used to prolong the life of others. Intellectually, the copper’s family realised this. Still, it was a painful farewell for them and I recall it was one of the grimmest operations I’ve sat in on. Operating theatres are usually fairly fun places, actually.
HG
Why bring up deformed or mentally handicapped, because some board of government officials (see OP) has decided to define a group of newborns (“seriously disabled”) to consider for euthanasia. It does sound like we might be talking about them and this makes me shudder. I feel great sadness when a newborn dies on its own, but I feel great fear for our future when we began defining who lives and who dies. A group of people are making the choice, not letting life take its own course to an end.
We can spend a great deal of time debating what life is or we can, as someone else already said, err on the side of life. We can, quite ridiculously as people from the richest societies in the World, debate the costs, or we can ask what can we do to assist birth. I’d rather hear the government board debate how long the doctors should try to help before letting the newborn die on its own, rather than which should be euthanized. The pain of the parents would seem to be something not generalizable. Some parents might want the newborn euthanized, while others -full of that strange thing called hope - might want to fight to keep the baby alive.
As Westerners, we may be a little too comfortable with the process of childbirth; so, just to remind everyone here are the top five killers of human beings:
Rank Cause Numbers (thousands per year) % of all deaths
1 Neonatal causes 3,910 37
2 Acute respiratory infections 2,027 19
3 Diarrheal diseases 1,762 17
4 Malaria 853 8
5 Measles 395 4
cdc.gov/malaria/impact/index.htm
So, if you guarantee me that this is not the beginning of some Brave New World future of embryonic/postnatal selection, than my fears are allayed.
[quote=“jdsmith”]I’m not certain it’s a matter of being desensitized or not. There are a LOT of variables at play. Ultimately the choice is the parents’.
The financial reprecusions IMHO should be a result of the choice and not a cause. The economic reality would force a valuation on the decision, ie “What is the worth/cost of the child being kept alive?” and “What would be the economic benefit of doing so?”
These are NOT things that should be on a parents’ mind or a Dr. What is best for the patient is. I also do not think it diminishes the value of humanity to effect a truly merciful “killing.” Sometimes doing what is right does not leave one with a sense of accomplishment or absolution.
Heavy shit this is.[/quote]
Okay Yoda.
You’re right. The medical professional should not be making the decision. They convey the information, and should do what the parents wish and the law allows. We have bioethics committees to sort out the ethics of these situations. There is a committee in every hospital in the U.S. that can be convened for tough decisions like these. They assist folks in making the best ethical decision possible for that situation at that particular time.
Bodo
Not euthanasia, but another example of extreme medical intervention.
[quote=“BBC: Treatment keeps girl child-sized”]Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life.
Ashley’s parents, Seattle residents who have not given their names, went public over their daughter’s treatment in a blog launched on 1 January.
Their decision came after information about Ashley’s case was published in a US medical journal last year, triggering considerable debate and criticism.
[…]
Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her “Pillow Angel”, because she does not move from wherever they put her, usually on a pillow.
The couple decided three years ago to take steps to minimise their daughter’s adult height and weight.
In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.
Ashley’s parents said the decision to remove their daughter’s uterus and breast buds was for the girl’s comfort and safety.
“Ashley has no need for her uterus since she will not be bearing children,” they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.
The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.
The removal of the girl’s breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.
The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.
“If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity,” they said.
“The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” [/quote]
[quote=“Jaboney”]Not euthanasia, but another example of extreme medical intervention.
[quote=“BBC: Treatment keeps girl child-sized”]Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life.
Ashley’s parents, Seattle residents who have not given their names, went public over their daughter’s treatment in a blog launched on 1 January.
Their decision came after information about Ashley’s case was published in a US medical journal last year, triggering considerable debate and criticism.
[…]
Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her “Pillow Angel”, because she does not move from wherever they put her, usually on a pillow.
The couple decided three years ago to take steps to minimise their daughter’s adult height and weight.
In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.
Ashley’s parents said the decision to remove their daughter’s uterus and breast buds was for the girl’s comfort and safety.
“Ashley has no need for her uterus since she will not be bearing children,” they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.
The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.
The removal of the girl’s breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.
The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.
“If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity,” they said.
“The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” [/quote][/quote]
Saw the reports on TV. Makes a lot of sense and the parents have gone about it sensibly. Also a good way to get discount airfares for the girl.
BroonAirmiles
Someone once posted that liberalism is a mental disorder, should they be euthanized ? Executing people based on their political views, lovely.
Given that such leftwing types have already been lobotomized, it seems a small step to me to finish the job by euthanizing them.
Given that such leftwing types have already been lobotomized, it seems a small step to me to finish the job by euthanizing them.[/quote]That’s not true, I still have my bottom intact.
I’d rather have a bottle in front of me, than a frontal lobotomy.
Umm, 
what would you call abortion then?[/quote][/quote]
Well why not just follow the fundamental nature of nature then. No medicine required. No medical help needed.
I wish I had been aborted. Nobody aks us if we want to be born in the first place.
Umm, what would you call abortion then?[/quote]
Well why not just follow the fundamental nature of nature then. No medicine required. No medical help needed.
I wish I had been aborted. Nobody aks us if we want to be born in the first place.[/quote][/quote]
Thread hits bottom.
Digs.
[quote=“Groo”]As Westerners, we may be a little too comfortable with the process of childbirth; so, just to remind everyone here are the top five killers of human beings:
Rank Cause Numbers (thousands per year) % of all deaths
1 Neonatal causes 3,910 37
2 Acute respiratory infections 2,027 19
3 Diarrheal diseases 1,762 17
4 Malaria 853 8
5 Measles 395 4
.[/quote]
I always thought is was lack of oxygen to the brain
A perfect example of lowbottomy if I’ve seen one.
Damn who died or was aborted and left you a sense of humor! haha
Damn who died or was aborted and left you a sense of humor! haha[/quote]
Well lets look at the issue. Ticking off the disabled. Seems common in nature.
Nature is nice. No stupid morality or religion.
The infirm ill weak sick lame get death. The fitter animalies cling on.
I say remove all the machines. If the body stops working then it is the right decision.
If I’m in a coma stop feeding me. I’ll just fade away. DNR please.
We have a lot to answer with wasted finances emotional strain and giving people false hope of avoiding what comes naturally to us all… death.
Should we help death along. Sure… why not? Humans interfere with all other aspects of life.