Thursday, June 22, 2006

Discrimination II

I don't mean to overexpose the topic of when it's permissible to resuscitate or not resuscitate a premature baby, but there were enough interesting comments on my last post that I thought I'd go over it again. It seems to interest people and it is certainly relevant to those of us who work in the neonatal field. Plus, sometimes I have trouble thinking of what to write about, so this way I can save some other topics for another day.

Dear readers, I feel I must gently and good naturedly take you to task. Although the comments to the last post brought up interesting aspects of the topic, there were two central questions in the post, two issues that are the crux of the matter, that no commenter ventured to specifically answer. Those questions are:

1. At what gestation is it permissible to not resuscitate a premature baby? In other words, at what rate of survival and disability is it permissible to not resuscitate a premature baby? I know it's hard to give a specific number, yet that is what neonatologists are required to do at times, especially if there is a disagreement between the parents and neonatologist about resuscitation.

2. Is it age discrimination to say it's okay to let a newly born 24 weeker die, given that their survival rate is 55 - 60%, when we would not allow that if it were an older child? There seems to be something about the extremes of life ages, at the very beginning and the very end, when it is acceptable to let someone die, when we wouldn't do so if it were, for example, a 10 or 20 or 30 year old. A 90 year old woman with cancer that has a 55% chance of cure with chemotherapy? Most people would find it acceptable if she opted to forego treatment, preferring to die instead of undergo the hardships of the cure. Similarly, many think it's okay to not aggressively resuscitate a 24 weeker when they are a few seconds old. But we would really wonder about a 25 year old woman with cancer with a 55% cure rate if she didn't opt for treament.

One commenter - Ariella - said it was legally and ethically wrong for me to not respect parents' wishes if they didn't want resuscitation done on a 24 weeker. I appreciate her opinion, but Ariell, surely somewhere there is a survival rate at which we must resuscitate the baby even against the parents' wishes. What is it?

Finally, I just want to reiterate what Becca said, that there is a difference beween functional impairment and quality of life. Very true - people with disabilities can have an excellent quality of life, even if they cannot do some of the things we think are important.

P.S. Last night I watched the movie "The Ringer" on dvd. I recommend it, especially for anyone who thinks that people with disabilities don't have a good quality of life.

26 Comments:

Blogger Becca said...

Thanks for the mention, NeoDoc - as someone living with some of the impairments that others have mentioned as being intolerable to them (long-term pain, severely impaired mobility, difficulty managing continence, reliance on others for some aspects of personal care) - it really chills me when someone uses any of those things as an example reason to decide to withhold life-saving treatment from an infant.

As to the questions? Ok, I'll bite.

I'd say that not even attempting resuscitation on a baby younger than 23 weeks, although I would be uncomfortable with it, is currently reasonable if that is the wish of the parents. There will always have to be exceptions in both directions and it'd be terrible to legislate in a way that caused problems for babies at either extreme - the occasional exceptionally vigorous 22-weeker being the one most likely to be hurt by any such rule at the moment, I guess.

And to the latter question? Yes, it's age discrimination. Possibly with a little anticipatory disability discrimination thrown in ("s/he might be disabled so it's better to let him/her die"). But then I speak as someone who'd extend a chance at life to any tot born with a possibility of being able to use that chance - cost be damned, we all live in rich countries and if some budgetary redistribution is needed then bring it on. :)

7:10 PM  
Blogger dlamming said...

Maybe I don't understand how the law works... but a patient can sign a DNR request for themselves or their dependents, including incapcitated spouses. If you ignore this request, they/the survivors can of course sue you.

So then, assuming that you have asked for and been denied consent to help the infant, how would reviving a baby against the parents wishes not subject you/the hospital to an immediate lawsuit for damages? Including, of course, any and all medical care that the child might need as a result of being a premie?

10:37 PM  
Blogger stockingup99 said...

Only the parent can know. Their wishes should be honored.

If they want to hold and comfort their child while is passes, how can it be denied?

7:44 AM  
Blogger stockingup99 said...

NeoHero said "Ariell, surely somewhere there is a survival rate at which we must resuscitate the baby even against the parents' wishes. What is it?"

Never. Your predictions should not be able to deny me the right to hold my child as it passes, to stop the pain the treatments cause.

I reserve the right to refuse any treatment for me or my child. How can guesses based on weeks of gestation outway what the parent knows in their heart.

Too me this seems more like a religious issue, than a matter of science.

I will not get involved in the rights for the disabled issue. It is beside the point. This is about parents choice being denied because you feel you know better than they do about what is in their hearts.

10:31 AM  
Anonymous Anonymous said...

Oh, I don't think I know the answer to the first question. For me, a lot of it would boil down to pain and suffering-not living a life of disabilities, but pain and suffering at the moment....can we resusitate this baby and will it be more comfortable or will resusitating the baby add to it's pain and suffering.

As for the second question, I think we have a moral obligation to save the babies that we believe have a pretty good chance of living. I don't know what percentage would be the cut off for me, and I certainly don't have enough knowledge about neonates to make an informed decision, however my gut would tell me that if a baby had a pretty good chance of living if they were resusitated, I am not sure I could chose any other option and sleep at night.

10:49 AM  
Anonymous Ariella said...

. . . surely somewhere there is a survival rate at which we must resuscitate the baby even against the parents' wishes. What is it?

As I understand "the law" (which, of course, varies from state to state), a parent has complete control over the care a child receives in the hospital. To use an extreme (and somewhat distasteful) example, think of times when Christian Scientists want to forego the use of blood transfusions because it's against their religion.

The Supreme Court has stated that a hospital can't treat someone who refuses treatment, though those rules HAVE been curtailed for children. I believe the quote was something like, "A parent has the right to forego simple livesaving treatment, however a child has no concept of it..." You get the idea.

Anyway, talking specifically about the legality of it, I would think that unless the hospital has an explicit policy stating otherwise, the parents wishes are the ones the hospital has to follow. And, of course, if a doctor wanted to override the parents wishes for the child (or even an incapacitated adult, as with Nancy Cruzan), the courts would have to be involved.

I mean, this is certainly not territory I would wish upon anyone. And with a premie needs care, what would probably happen would be that the baby would be resusitated over the parents wishes and then there would be a court-order, etc. This is all really closely tied to the "Right to Life" issue and abortion and even the "Right to Die" issue, and I guess that's why people get very angry about it.

Last, to answer your questions: I would say anything up to 28 weeks is permissible not to resusitate. I'm basing that on statistics of which I am aware, but clearly I am not a medical professional, so that's just my opinion. For me, also, this is a totally situationally based issue: does the child have other functional impairments? Although we've been dancing around the issue of "quality of life," I feel there is an area where quality of life has deteriorated to the point where I wouldn't want to live, and I wouldn't want my child to live. I think I'll decline to define that point here, however.

Second, no, I don't think it's age discrimination. I think it's merely playing the odds -- a full term baby is less likely to have other issues that a preemie is likely to have.

Also, I have to add, I don't have children yet, so this is all very theoretical for me. Maybe once I have them, I will feel differently, but I don't know. My mother is dead; my grandmother is dead; and I've had a lot of animals die. For my grandmother, I was part of the decision to take her off of life support, and I've also made the decision that my pet's "quality of life" wasn't good enough to keep him/her alive. I think I could be similarly objective in other areas.

11:05 AM  
Blogger Ex Utero said...

I'll bite on part 2: Is it age discimination? I think the issue is mirky for another reason. There is a greater likelihood that other lives will be negatively impacted when you save a 23 weeker or a 97 year old cancer patient. Just because they can survive and have some quality of life is not necessarily the right equation that we should be looking at. There is a greater cost to be tallied. The cost to caregivers, the cost to society, the cost to humanity for life extension when life quality becomes (at some point) so marginal that even someone as articulate as becca would recongize that the effect of added life quantity cannot make up for the dilution of so many lives' loss of quality. When we save lives at the extremes, we have a higher liklihood of creating veggies, a higher liklihood of breaking up famlies, and a higher liklihood of finanical ruin.

I'm not saying we shouldn't do it, I'm saying its not sufficient to simply pull out an all or none platitude and say we draw the line here. Doctors and families must be able to come to these decisions one child and family at a time, recognizing that its not all about the child or all about the parents (and I'm especially pointing my mouse at you stocking 99 - I certainly don't agree with your opinions on this topic). That each situation is unique and that in some cases (when the child's outcome is uncertain and tenuous), parent's wishes are paramount because they are the best surrogates for their child and in others, the needs of the child outwieght everything else (the odds are good - the physician is the best person to assess prognosis). On the bubble is where formal ethics breaks down and people just have to do the best they can.

11:31 AM  
Blogger mary said...

Ex utero, can you find a way to talk about people with profound cognitive impairment that doesn't include calling them "veggies"? When you call a real person a veggie, you remove them from the realm of humanity. It doesn't matter at all, then, if they live or die. They aren't persons.

Of course, this is one way to solve the ethical dilemmas poised by life at the fringe of viability-make the life non-human, and you have no dilemma. But as someone with a lot of experience on the post-NICU end, who cares deeply for these babies as they grow up, I object to de-personalizing human beings in an effort to say they don't deserve life.

People are not veggies.

1:01 PM  
Blogger Shinga said...

This is OT. I'm asking for contributions to the next Paediatric Grand Rounds - it would really help if you would please post a reminder on your blog as well. I'm including a link to my reminder because I have produced a mocked-up magazine cover that I would be delighted for you to use to illustrate the begging post.

http://breathspakids.blogspot.com/2006/06/paediatric-grand-rounds-needs-your.html

I would like to include this post as your PGR entry if that is OK by you?

Regards - Shinga

3:40 PM  
Blogger neonataldoc said...

Thanks, everyone, very interesting stuff. Stockingup99, I simply cannot agree with you. If a baby is born at 35 weeks and needs a little resuscitation, but the parents say not to, you had better believe I'm resuscitating that kid. Oh, and thank you for recognizing my heroic status.

Ariella, very nice eanswer. Bear in mind, though, that at the very beginning of life, when we have to make the decision regarding resuscitation, we don't know if this baby will be one who survives intact or with lots of disabilities. It would be nice to have a crystal ball, but I sure don't.

Ex utero, I guess that's the best answer I've heard about the age discrimination issue. Also, it's one of the only answers I've heard about it. Most people avoid the issue. I agree we have to try to individualize.

Shinga, of course you can use this for peds grand rounds, thank you for asking. I'll email it to you.

9:23 PM  
Blogger Becca said...

There's another disability-related argument emerging here - ex utero has come closest to it:

Just as the greatest impediment to my mobility is not that I have a wheelchair but that architects persist in putting stairs in buildings, the greatest impairment to quality of life for profoundly disabled people and their loved ones is not that they have such huge support needs, but that those needs are not being well met by any western government I can think of. There is not enough respite, not enough homecare, not enough kindergarten places for people that will never potty-train. Access to essential equipment is restricted and assessed and burocracied within an inch of its life. At least, I think that's what it must be. Because nobody I know who has had their life touched by someone with the profound intellectual and physical disability that you are talking about so nicely as 'veggies' would ever talk about the person themself as the problem. It's all the other stuff.

I am guessing that you neonatal paeds, who of course do not get a crystal ball, very rarely if ever see your profoundly disabled little patients - the 'failures' in your world, I suspect - grow up and love and laugh and learn, make things happen in their own tiny universe, attend high school, make big moony eyes at the love of their lives. Get those moony eyes reciprocated, graduate from high school, live life and enjoy it, dammit. The barriers to the good stuff are nothing to do with an individual's disability and everything to do with discriminatory attitudes, rationed resources and vast expanses of red tape.

3:44 AM  
Anonymous Anonymous said...

This discussion is slightly driving me crazy. So many certainties based on logic (good) and ignorance(not so good). As the mother of a pretty seriously impaired young adult, I am terrified of the "quality of life" arguments. I know that from the outside, society at large would regard my daughter's quality of life as poor, and my lot as a hard one. Believe me, it doesn't look like that from where I am. I have a younger, highly intelligent daughter who gets far less joy from her life than my first-born!
I'm afraid I could write an epic on this subject, and this isn't the place but here's (part) of my view.

As I said in an earlier post, high tech NICUs weren't an option in my day. If you were in trouble before 36 weeks, the choice was between an emergency ceasar for a baby with a poor chance of surviving intact, or to leave the baby in situ to die. I suspect - but don't know for certain - that my doctor opted for the latter. When my own condition deteriorated, the emergency Caesar became essential. Outcome: one asphyxiated baby who might have been intact if born a day or two earlier. "Letting" a baby die can maybe be a bit problemmatic. A quiet death in its mother's arms sound so kind - a metaphorical pillow over the face slightly less so. I am furiously against "deadlines" that say this child shall live, this child should not.

5:56 AM  
Blogger Sarabeth said...

Quality of life issues and the impact on others should have some weight in deciding the criteria for resuscitation. Drawing an absolute line in the sand is too draconian. (My husband will be amazed that I'm saying this. The woman who told him that if I were to go into labor at 23 weeks to not let his colleagues resuscitate my baby.)

I have a very close friend that I watch struggle with her sons daily--twins born at 28 weeks. Twin B is by most standards completely in the range of normal development. Twin A is a different story. Being legally blind makes everything in life challenging to him--even eating. His growth is stunted--his parents are footing the bill for growth hormone. Coordinating his body movements is difficult for him--anyone watching can tell. He gets ill easily. He has numerous problems with potty training at the age of four. Twin A will have a more difficult life than his brother. The number of activities that he can do will always be less.

Becca, you said The barriers to the good stuff are nothing to do with an individual's disability and everything to do with discriminatory attitudes, rationed resources and vast expanses of red tape. Don't you suspect that part of the barriers you describe the reluctance of society at large to make expensive changes for a small population of people?

4:13 PM  
Anonymous Anonymous said...

Sarabeth-Your comments make me cringe.

Good design benefits ALL of us as a society, not just a select group of disabled individuals. As for being more expensive, it can sometimes be the case, but not always. It depends a lot of the experience of a contractor. To assume that we shouldn't make changes for "some" of the population is outrageous. Disabled people shouldn't be denied access or rights like everyone else, just because it's "inconvenient" to make things accessible. As a matter of fact, accessible design is also called "universal" design.

I think you would be pleasantly surprised at how easy it is to implement "good design" into buildings and homes while making it accessible.

I had a house built years ago (this was not a custom home). We didn't know how disabled our child would be at the time, since the only piece of equipment was a wheelchair. We met with the builder who raised our foundation 8 inches which eliminated a step on the sidewalk up to our house. From the street, no one had ever been able to figure out that any change had been made, our sidewalk to the front door, curved like everyone else. We chose a more open floor plan, put in three foot wide doors on the main floor, beautiful three foot wide triple french doors in our family room to allow access to the outside and moved the laundry room from the first floor to the basement to make a changing room for our child. When we sold our house, we didn't advertise and of these changes. Our changing room with a pocket door off the family room was used as a home office and will store toys for their children when they have them.

11:55 PM  
Blogger Becca said...

Don't you suspect that part of the barriers you describe the reluctance of society at large to make expensive changes for a small population of people?

Yep, Sarabeth, I expect that they do. But pardon me for wanting the right to attend the same school, university, workplace, recreation as my peers. Forgive me for wanting to roll into a shop, select clothes, try them on and pay for them. Excuse me for wishing to be able to spontaneously decide to go somewhere, board a bus or a train and do so.

Because, you see, some of the things that I require to enable me to do those basic things are very expensive indeed. Not to be counted in nights occupying a NICU cot and their hundreds of thousands of dollars, to be sure, but expensive all the same. The thing is, that while extending the offer of life to the babies we are discussing would, inevitably, increase the population of disabled people, it would not actually bring any new needs to the world. In fact, I'd hazard a guess that the numbers involved - premmy babies who are dying who might have lived - are really quite small.

My sister, born at 27 weeks in 1987 to dire predictions, 11 pneumothoraxes and 3 expensive months in hospital, is not disabled. My disabilities are not the result of prematurity. At not quite yet twenty-one years old I can sit upright unsupported for approximately 5 minutes before gently keeling over sideways, walk a painful 25 or 30 yards with crutches, propel myself a few hundred yards at a time on level surfaces in an ultra-expensive, ultra-light manual wheelchair. There are some things that I was born unable to do, and many, many more that I have stopped being able to do since then. Hundreds, probably, although I've no interest in listing them. And you know what? My life is great, thanks. Not easy, no, but many lives are not easy and it's not always got much to do with disability.

I have a driver's license and a car, a job, I've just completed the final piece of work for my bachelor's degree and am considering doing teacher training. I live independantly, with personal assistant support every day. I have friends, have had sexual relationships, I work with children who look up to and admire me.

It makes me feel a bit sick to think that someone genuinely believes that the disabilities I have make my life less worth living - or less worth saving.

3:52 AM  
Anonymous Anonymous said...

It seems that the people who think disability can't be borne are those who watch it, not live it. Whose quality of life are we considering here?

And Becca - if some of the able bodied had your spirit, the world would be a better place. Good luck and a long and happy life to you

5:41 AM  
Blogger Sarabeth said...

Please don't read my comments regarding the cost of changing buildings as something I believe. I don't. I have no problem with making sidewalks, public buildings, and the like accessible to everyone. I was playing devil's advocate.

Making buildings accessible to a wide variety of people is good for business--people in walkers, with wheelchairs, ladies with strollers and kids in tow.

I have one question for you, Becca. (And please don't assume that I am a proponent of what I ask.) Should government have the power to force a business to become completely accessible to everyone via retrofit (lifts, ramps, elevators) even when the costs would cause the business to become unprofitable or to close?

1:24 PM  
Blogger Becca said...

Sorry, Sarabeth, I didn't recognise the devil's advocate element of your argument - forgive me! That's a bit of a weakness of mine. What I think still stands, of course, and is directed at the world at large. :) I hope I didn't sound too angry directly at you.

Should governments have the power to force accessibility? Yes, I think they should. How they choose to use it is something else entirely, though. I do not want corner-shops and tiny community hardware stores to go out of business. I do want the full weight of the law to come crashing down on the head of shopkeepers who could build that ramp but don't, gas stations that bar me at the threshold by prioritising flower stands over a perfectly servicable level access door, big chains that dismiss my plea to remove enough of the mops, buckets and spare chairs from the accessible toilet that I can actually reach the can. It shouldn't be a choice between buying a bright clean new kitchen cheaply from a well-known firm and having it fitted promptly, or getting one that can be used from a wheelchair. I don't think very many places are doing all that they reasonably could to improve their access (and let's not forget that there's a lot to access that isn't about lifts and ramps) - and along with the possibility of forcing places to sort those things out there could be a lot more support from the higher-up levels too - financial grants, planning permission, general advice, maybe the odd freebie when a municipality is re-paving a street or whatever.

3:22 PM  
Blogger the granola said...

"Should governments have the power to force accessibility? Yes, I think they should."

There really is only so far we can take things, realistically, though - as you commented in your not wishing for small businesses to go out of business because of it.

My sister is profoundly deaf. There is probably only about 1% of the population that my sister can talk to spontaneously. Forcing accessibility for her and her peers would mean that everyone learn to use sign language. There are a lot of things she can do, and she certainly has a high quality of life. But she has lost probably 3/4 of the socialization we are all used to.

What is true is that, on a number of levels, we can't normalize what is disabled. We can ease it as much as possible by creating ramps, easy access, interpreters, braille, etc. But there will always, always be some things that are difficult for some people and this can't be fixed.

But this argument is completely seperate from Neonatal's question:

I think, like others, every case should be taken individually as to whether to resuscitate or not. But I can concieve of cases where it would be appropriate, even necessary, for the doctor to go against the parents' wishes. I fear not all parents have the best interests of their child in mind.

As to age discrimination I think is partly a matter of attachment. One wants to fight more for someone they've known and loved for 10 years than someone they've not known, but loved for 4 months. Good or bad, I think it is real.

But even more real, is the matter of how they know the child. Even if the odds are exactly the same, it may seem to the parents less possible for the premature infant to survive than the child afflicted with cancer. In the previous case, the tiny babe is clearly incredibly fragile and they've never seen him any other way. In the second case, they've seen their kid already thrive. I think this has a great emotional impact on what decision the parents make.

6:16 PM  
Blogger Becca said...

the_granola: I did actually receive a compulsory 6 week course of basic sign language in my first year at high school. There was an option of additional lessons year-round as part of a lunchtime club, which I attended. This was provided because our school shared a site with the high-school department of the local segregated school for Deaf children, and although the integration between us was pitiful (they were kept in separate lessons for ~90% of the time and only a few classes got to mix at all), I am very glad of the 3 years I spent learning basic sign language. I can't see why at least that 6 week basic course couldn't be provided in all schools. That wouldn't, of course, result in total free communication between people whose first language is sign language and everyone else, but it'd be a helluva good start, no?

Sorry, NeoDoc, I seem to have hijacked your thread!

7:09 PM  
Blogger Sarabeth said...

Hey, let's leave neonataldoc alone and move this to my blog.

8:29 PM  
Blogger the granola said...

I think it is a great idea for highschools with deaf integration, though sadly it does sound like that particular goal wasn't accomplished very well.

However, I guarantee that 6 compulsory weeks without any followup either through experience or further classes will not do very much. ASL is a foreign language. Let us say instead of ASL, it was French everyone was required to take for 6 weeks during their first year of highschool. Five years later, they meet a Frenchman for the first time.

I had 3 years of Spanish and I currently can't carry on a conversation much beyond Hi, how are you, good thank you.

Fluent ASL is not easy. I'm not very good at it, though I can get by with a patient deaf person. I had sign language in my home for five years before I went to college. Then I lived near my sister for 7 years.

Consider also those people who don't care. What percentage of a class would that be?

The upshot is that the cost would so outweigh the benefit here that it wouldn't be worth it. If we are going to make a language mandatory, there is far more need for Spanish and Japanese than ASL.

That is just an example. As much as we want everyone to have as normalized a life as possible, society really does have a limit at which alterations to accomodate disability becomes more than it can afford.

Clearly, some people stop far short of that, and that needs to change.

9:56 PM  
Anonymous Anonymous said...

I just wandered over to your site. I don't have an answer to your questions. But I recently watched the documentary Little Man about a preemie. Seeing a family living with a preemie and the care involved once he was released from the hospital was very eye opening.

5:08 AM  
Anonymous Anonymous said...

I'm late to the post, but I think everyone interested in the issue would find the [i]Miller[/i] case interesting reading. Here's the cite:

http://www.supreme.courts.state.tx.us/historical/2003/sept/010079.htm

In this case Sidney Miller was born at 23 weeks gestation. She was born alive, but her parents requested no heroic measures be taken to sustain her life. Measures were taken over their objections, per hospital policy, and Sidney suffered a brain hemmorhage during her first week of life. The Court described her condition as follows:

"At the time of trial, Sidney was seven years old and could not walk, talk, feed herself, or sit up on her own. The evidence demonstrated that Sidney was legally blind, suffered from severe mental retardation, cerebral palsy, seizures, and spastic quadriparesis in her limbs. She could not be toilet-trained and required a shunt in her brain to drain fluids that accumulate there and needed care twenty-four hours a day. The evidence further demonstrated that her circumstances will not change."

The hospital was not liable for negligence or battery.

After that I will bite on the two questions:

1) 70% and 70%. Yes, that's high. But let's leave aside the quality of life issue and focus on the issue of taking care of and raising a severely disabled child. Especially a child like Sidney Miller that will likely need 24 hour care for her entire life. I really believe that parents should have the right to decide whether they are willing and able to raise a child that would not otherwise survive without extreme life-saving measures. I believe most parents will choose life-saving measures at a level well below 70%/70%, but your asked for the point at which hospital policy can circumvent parental wishes.

2)Is it age discrimination? I don't see it that way. I think using age discrimination is an interesting way to argue around the natural processes of life and death. At some point, it is too early for life to begin or it is too late for life to continue.

11:58 AM  
Anonymous David Harmon said...

There are several issues here:

One is the medical issue that not all babies can be saved -- but whether they can or not, trying can be remarkably costly. Also, the borderline cases can end up being "mostly" saved -- that is, they're disabled or otherwise afflicted, which is rough on all concerned.

Another is that at some point, "someone" has to make a decision. The problem here is that the doctor may have better knowledge of the situation -- but it's still the parents who have the real stake in the decision, because it's their genes headed for the future, and their "job" to raise the kid. Therefore, the doctor can give advice, but the parents have to get the final decision. Any other rule is liable to have mothers-to-be hiding from the doctors....

A third point: A variety of other mammals, including domestic dogs and cats, take a strict approach to this business. Bluntly, they will commonly reject or kill any of their own offspring that seem (to them) deformed, sickly, or otherwise suspect (including "they smell wrong"). It shouldn't be surprising that humans have to deal with the same basic question. But then, we have far more resources to handle both the question, and either answer.

4:06 PM  
Anonymous Anonymous said...

I am a mother of twin infants who were born full term and in excellent health. However, if I should have a third, and it was born premature, I'm not sure what I would do. At some point, it isn't just the quality of life of that premature baby involved, but a whole family. A seriously impaired child is a huge drain on a family's energy and resources. Only the parents of that child can decide what they are capable of taking on. If the baby has had a serious setback of one kind or another, and it looks like it will survive, but be very seriously disabled, I think the parents should be able to refuse treatment out of consideration for their other children.

1:48 PM  

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