Monday, January 22, 2007

Disagreement

The extremely premature baby had a large intracranial hemorrhage, a large bleed into her brain, and most likely she would have significant brain damage. The question was whether or not to remove her from life support, to disconnect her from the ventilator and allow her to die.

It is not an easy decision. Different neonatologists have different opinions about it, just like different readers of this post will. Some neonatologists are more likely to offer termination of life support to the parents, others less likely. There is a difference of opinion about how big the hemorrhage must be to justify removal of life support. Legally, we are really only allowed to terminate life support if continued care is futile or inhumane, not just because a baby will be brain damaged, although many physicians and parents ignore that legality.

This specific case happened several years ago at an NICU I moonlighted in once in a while, covering some nights when they needed help. The two neonatologists full time at the NICU disagreed about discontinuation of life support, one in favor, one against. They each talked to the mother of the baby, leaving her confused, I'm sure. The debate went on for days, with no resolution. The obstetrician became involved, siding with stopping support. (Malpractice awards for a damaged baby can be much greater than those for a dead baby.)

The debate went on for so long that it became moot, because the baby's lungs and ventilator settings had improved enough that the baby would survive off the ventilator - but the neonatologists were so busy dissing each other that neither of them recognized this. They kept debating the issue. When they asked my opinion, I pointed this out to them, and eventually the baby was taken off the ventilator and survived.

The two neonatologists' personal animosity towards each other preceded this case and lasted long afterwards, too. Unfortunately, it affected their care of the baby and mother, making a sad situation sadder. I have had situations where colleagues and I disagreed about stopping life support, but we always came to some agreement before we presented it to the parents, or if we couldn't agree, we presented that to the parents in a reasonable manner. Unfortunately, there was little done reasonably in this case.

This was not my profession's finest moment, and it might make you feel better to know that both of those neonatologists were fired from the hospital within the next few years. It might discourage you to know that they both quickly found jobs at other NICU's. I don't know what happened to the baby, but I suspect she's struggling neurodevelopmentally somewhere. I offer my best wishes to the mother and child, and hope the neonatologists have grown up.

31 Comments:

Anonymous Long Time Listener said...

hmm. It is always saddening and disheartening when someone else pays the price for this type of issue. And, as you say, there will be a rather large price. There is, quite apart from the child's development, the unquestioning stresses that will arise as this child is raised for all the family.The list is endless- it can start with being totally knackered after a poor day and night with the child and we all know how rubbish and mis judged our comments and actions can be when we are short on sleep. The mistakes we make..

The point that I am almost getting around to making is that an esoteric discussion does no-one any good and is out of place in front of a fraught mother/father.

As I have said elsewhere, I am very fortunate in the neos that I met. They have never in the 11 years I have known them placed me in this type of a quandry. As I wrote elsewhere there are neos out there that are sterling - and I know them. I have trusted them with my child's life and they have looked after him as they would their own- of that I do not doubt. They were confident in sharing their fears. They are not afraid to say they don't know and for that I thank them.

12:54 PM  
Blogger PedsPT said...

First, I want to tell you that I love your blog and appreciate your honesty and "realness".
I am the mother of 27 week ID twin girls born emergently secondary to HELLP syndrome. I can relate to your lastest post and would like to praise you for attempting to present parents with advice that is not conflicting.
Although my sitaution was probably not as serious as the one you mentioned, the decision I had to make, was at the time, the most critical and difficult decision I have ever made. I had a PE 3 weeks post c-section and had to go on anticoag meds. I was pumping for my girls and now was worried about breastmilk on meds. Lovenox had not been studied in breastmilk and studies on Coumadin in breastmilk involved fullterm babies, not 2 lb preemies. I was given advice to continue breastfeeding and advice to stop and give formula. Both sides argued strongly by different Neos. I was so confused and decided to not risk it and give formula. 2 days after they started formula and Reglan one of my daughters developed NEC. 2 days later, the other one did too. Both needed surgery, one emergently for what they though was a perf (but it was not) and one for a stricture after NEC had improved on antibiotics. Did they get NEC because I made the wrong decision? Could it have been the Reglan? Would it just have happened no matter what? I will never know. But it bothers me to this day how no one attempted to get together and give me solid, unified advice when I was in this horrible place. So thank you for realizing how important this is for parents. You sound like a wonderful, compassionate doctor.

On a side note, with all the recent talk about preemies and their futures, my girls appear to be a part of that lucky percentage, at least for now. They are and always have been on target for all areas of development and are on their way to being 3 years old. Hopefully starting school will not bring up any new challanges or concerns, but I am aware of the possiblities and will always remember where they started.

4:28 PM  
Anonymous Chris and Vic (CAK) said...

I may be falling into the trap of over-simplification, but here is how I would proceed:
In any decision, I make a paper-and-pencil list of pros and cons. If somebody is an expert, I put their opinions or presumed facts into clear language, into one of these columns. (You could call these two columns risks and benefits, as well.)

Experts disagree---that is a fact of life. I have had 2nd opinions about shunts, ventriculostomies, from several docs with regard to my son's hydrocephalus issues. One doc laughed when he heard how another neurosurgeon approaches shunt problems such as my son has had in the past. I asked him, "Why are you laughing?" That doc said, "Only Dr. So-and-so would do it that way." Laughing at his colleague diminished that doc in my eyes, and I was that much less willing to trust him. And trust matters.

I have become suspicious of "experts". I think a fair question to ask is "How much of this is opinion and how much is irrefutable fact?" Or see the reaction when you say you want a 2nd opinion. Anybody who gets defensive loses my respect and trust.

When you see how much has changed in medicine and in neonatal medicine, in particular, you realize that a good decision is a moving target. Look at steroid use to wean infants off of ventilatory support? Once widely accepted, it is now thought to be responsible for many of the disabilties that preemies experience in the long-run.

Your other, equally weighty point, Neonatal Doc, is using quality of life vs futility (or inhumane) as a standard for discontinuing life support. In my state, an person needs to be in a persistent vegetative state in order to discontinue, and no infant ever fits that definition (not being "persistent" because they have just been born and have no history) . . . so there is yet another restraining standard.
BUT I believe that "futility" is as elusive as "quality of life," and you could get lost in the debate which becomes "esoteric" as long-time listener points out.

Down-to-earth, as opposed to esoteric,is what parents need and what they will live with their ex-preemie. The decision must be made primarily by them, they who have to live with the outcomes. The debate may then take even longer, as the pros and cons are weighed by them. If the neonatologists cannot agree, let the chaplain or the nurse or the hospital medical ethics board, or whoever has a bond with the family, help as the parents debate with themselves about such a Sophie's Choice kind of decision.

Finally, about growing up . . . the family will grow up and come of age, too, coming through this crucible. It is a true coming-of-age, at least it was for me.
Chris and Vic

5:13 PM  
Anonymous Helen Harrison said...

The situation you describe could well have been what occurred when our son Edward was(sort of)taken off the respirator.

Nurses who were there during the early "ethical" discussions concerning our son(which we knew nothing about) have hinted darkly that it was.

Several of these nurses are friends of ours, and to this day I have never asked them for the details of what went on behind the scenes. At this point I don't even want to know.

What I *do* know is that the docs continually misconstrued our wishes, and we constantly misconstrued their intent.

For example, I remember being asked by a doctor while I was still on the delivery table whether or not I "wanted" my baby. (This, after a precipitous delivery in which there was no time for counseling or discussion.) I was shocked at the question, and replied "Of course!" not understanding that this was going to start a chain of aggressive treatment.

What *I* meant was "of course I want this baby! We got pregnant deliberately, and it has been the happiest time of our lives. If I hadn't wanted a baby I wouldn't have become pregnant to begin with!"

My husband and I were both in tears at our son's bedside in the NICU which the staff took to mean we desperately wanted him to live, no matter what.

And we *were* grieving what we had been told was our son's impending death. A neonatologist in charge of our son had bluntly told my husband, on our son's admission to the NICU: "He has 7 (or was it 9?) serious problems, any of which could kill him, but all together, there is no hope."

We were there, we thought, at a death watch, but we also knew that there could be an even more tragic outcome -- our son's severely impaired survival.

We assumed that the neonatologists, who struck us as kind, well-educated people who shared our values (we thought)would not violate the bounds of what(we thought) all decent people considered reasonable and humane.

Days went by. Our son rebounded from crisis to crisis and, with maximal support, was still alive. My mother and I approached one of the neonatologists and told him, "We don't want anything heroic done to keep this baby alive."

The neonatolgist assured us that our son, whose every organ system, it seemed, was being artificially supported, was not being treated "heroically."

I begin to suspect at that point that perhaps we weren't all on the same page.

Then came the conference with the head neonatologist who said our son had suffered a massive brain bleed and the kindest thing to do was let him go... We agreed, tearfully.

However, the doc also told us that he first wanted to wean Edward from the phenobarbital he was being given for seizures. I said that sounded cruel to me since phenobarb was the only half-way *possibly* calming or analgesic drug he had been given throughout this ordeal.

Not to worry, said the neo, "These babies do not feel pain the way you or I would."

Eventually we came to the NICU to hold our baby when(we thought) he would be taken from the vent. What happened instead was that some dials were turned and Ed was put on CPAP, and his numbers didn't look as bad as expected. At some point(again we were not in on this -- after 8 hours we had gone home to cry ourselves to sleep), he was put back on full vent support.

After that, the staff became very upbeat saying things like, "Aren't you glad you live in these miraculous times when babies like your son can be saved?"

I felt like Alice must have felt when she fell down the rabbit hole -- only this wasn't Wonderland, but a circle in hell.

Ed was then vigorously resuscitated through every crisis, and there were many of them over the months that followed.

Our son was put through torture that continues to this day 31 years later. This is *not* what we wanted for him, then or now.

It would have helped immensely if we had been allowed to know about, and be present at, all important discussions concerning our son. The process should have been totally transparent.

I would *very* much like to have heard any differences of opinion among the staff, and I think the staff might have wanted to know how we really felt.

Instead, every one was walking on eggs with us and talking around the real issues. When we tried to tell the docs what we did (or didn't) want, they were not able to hear it.

Based on our experience, and that of so many other parents, I think that these issues need to be discussed by every OB with every pregnant couple, before the time a viable birth becomes possible. Parents should then have the option (if they wish to take it) of preparing an advance directive stating what they do and don't want done in the event of such a birth. At least that would start the discussion.

Yes, it would be disturbing to some parents, but the alternative is much more disturbing, believe me.

To add a poignant post-script to all of this, two years ago I was speaking at a conference and a white haired lady came up to the podium afterwards. She introduced herself as one my son's old neonatologists (I remembered her fondly). She also told me that she had left neonatology for the very reasons I had discussed in my talk. She expressed amazement on learning that Ed was severely disabled (hydrocephalus, MR, CP, severe vision impairment, autism, etc.), since the follow-up clinic had apparently reported back to the NICU that he was doing great!

Folks, we need to start communicating with each other openly and honestly!

Yours for evidence-based, and transparent, medicine and ethics,

Helen Harrison

10:51 PM  
Blogger terri w/2 said...

Interesting discussion and so poignant for me considering that my surviving 25 weeker, now 21, just had ANOTHER surgery last week - this one to implant 2 metal rods along both sides of her spine due to scoliosis (secondary to severe cerebral palsy, secondary to neuro damage, secondary to grade IV IVH, secondary to extreme prematurity). .

Grade IV IVH children should NOT be kept alive, period end of story. There should be no debate. It's wrong. It's wrong for the infant who is asked to suffer through this life, going through repeated surgeries and hospitalizations in attempts to try and "fix" all the consequences of neuro damage. It is wrong to force parents (particularly mothers) into a lifetime of caregiving, foregoing future children, foregoing stable marriages, foregoing careers. .THIS is what should be presented to your parents of grade IV IVH preemies.

Life after is not pretty.

7:48 AM  
Blogger Nancy said...

We were lucky with the neo's that we encountered in our 106 day hospital stint. The first primary neo that was assigned to my daughter, was quickly changed per mine and my husband's request. Not because he was a bad doctor, after all he saved my daughter initially. But his bedside manner and social skills, or lack there of, completely sucked! After the first 2 weeks there, when I knew we were in for the long haul and my daughter had no intentions of dying, I wanted the neo's to talk to me about everything. This man had a difficult time saying hello to me and I was supposed to rely on him for information regarding my 25 weeker.....um no.

That being said, I can't see how having docs with 2 very different opinions can always be a detriment. Presenting parents with 2 equally viable options to a very difficult situation. There can be benefit to that. Provided that the information and differing view points are presented in an appropriate manner. Arguing and disagreeing behind the scenes really benefits no one. Is it so wrong to sit down with the parents and tell them up front that both doctors have differing view points on the matter and give them all of the information they have based their own opinions on to allow the parents to make their own decision?? Cause logically, I can't see how it would be.

Granted, often times parents in desperate situations such as these are looking for an "authority" to step in and say "this is what I think is absolutely best for this child." But ultimately, it's not just "this" child, it is MY child. And personally, no matter what any of those doctors said in those 4 months, I formulated my own opinions on what was going to happen with my child. No matter how many years they went to school or how many years they had been practicing, my child was was the here and now and any opinion, good or bad, I wanted to hear....in order to formulate my own.

Only once were we faced with discussing whether or not to remove my daughter from the vent. A few days before she was to have her head ultrasound, we were given all of the grim details about bleeds and the miraculous stories that went along with those. I work in special education, I see those preemies who weren't as lucky as others every single day. They are happy and leading pretty good lives. However, their parents, well that's a whole different story. In no way, shape or form was I going to be forced into a life that I didn't think I was prepared for. We flat out told the doctors that depending on the grade of the bleed, our decision would be made. Luckily we were never faced with having to make that decision as their was no evidence of a bleed.

Basically, I think what I am trying to say through all of this jabbering, is that I don't think that doctors disagreeing on a course of treatment is always a bad thing. When they don't present their positions to the parents, I think that's when it's harmful. They need to give these parents more credit than they do. Yes the decisions and viewpoints are of a delicate nature, but it has to be better to have all of the information rather than just a bit or none at all.

12:26 PM  
Blogger The Preemie Experiment said...

I actually feel a little different. On one hand, I am sorry that the mother felt confused because 2 doctors gave conflicting informtion. But, at least she was given both sides of the coin.

When my daughter (25 weeker) was in the NICU she had a very uneventful stay (besides A's and B's-vented less than 24 hours). One day she stopped urinating. One neo told us that she most likely had a genetic condition called CAH. He went into great detail about the endocrine system and then told us that she was put on steroids while they were awaiting the results of the blood test. We were not asked for concent. One steroid didn't work so another one was tried. And another. When the tests came back (not a quick blood test-it took days) it was inconclusive so she had another blood draw, which resulted in her needing yet another transfusion. A few days passed and I realized that the head of the NICU was not involved anymore. He seemed to have "turned her over" to this other neo. I saw him accross the NICU and went to talk to him. I could tell he was holding something back from me. He wouldn't even look me in the eyes. When I pressed him further he explained that he completely disagreed with the other neo. He felt that her lack of urinating was typical for a 25 weeker and he did not agree with starting her on the steroids, due to the risks. He also didn't agree with the draw for the 2nd CAH test.

I was outraged. I would have loved to been given both sides of the coin and investigated the situation more on my own.

12:36 PM  
Anonymous Chris and Vic said...

The neonatal doc and the responders to his Disagreement discussion, and many of the previous discussions as well, are well-educated, experienced, analytical people. They can problem-solve on their own. They don't deify the doctors, and so they aren't taken aback if a doctor acts disappointingly human. They are not so disarmed by 2 differing opinions. They are not confused when experts disagree.

But some people without the skills of the responders here WILL BE CONFUSED. A presenter should know his/her audience.
Others, younger, without the skills of analysis, problem solving, critical thinking, ethical decision-making; and lacking in experience will need baby-steps, will need help in analyzing and problem-solving.
Chris and Vic

4:58 PM  
Anonymous Claire said...

This highlights, I think, why all this decision making is so difficult, and why there are no easy answers. Disagreements come from different opinions, when what everyone longs for is facts - that elusive "truth". If I have learnt one thing in my long career as a carer (which is not a job I would have applied for, but not as absolutely ghastly as it may seem from the outside) it is to beware of those doctors (and others) who are absolutely certain that they are right, and "know" what will happen next. As I have said in earlier comments , I suspect (without knowing) that my daughter’s brain damage was a pretty direct consequence of a decision to leave her in utero, where she would have died, (a kindness, some would say) as opposed to a decision to deliver her “too soon” and face the consequences of prematurity. With hindsight, an early delivery of what turned out to be a physically vigorous baby with no lung problems was the “right” decision – but only retrospectively, and too late. Maybe, medically, the decisions of thirty years ago are not relevant to today’s terrifyingly vulnerable 24 weekers, but the ethical problems and the uncertainty of outcome doesn’t seem to me that different. No rational person would condemn anyone to a life of unbearable suffering. But the fact that some of you do not want my life, or my daughters life does not give you the right to tell me it isn’t worth living.

8:54 AM  
Blogger terri w/2 said...

Clare said: "No rational person would condemn anyone to a life of unbearable suffering."

Well said. And yet, that is what is happening to some of our severely preterm infants, and especially those with grade IV IVH's, which is why I believe it is time parents (like me) tell it like it really is. There is a big difference between being disabled and being disabled AND medically fragile. Children who are born severely preterm AND with IVH's are so doomed for a lifetime of not only severe disabililty but severe suffering. Someone needs to say enough is enough.

9:53 AM  
Anonymous Anonymous said...

"Grade IV IVH children should NOT be kept alive, period end of story. There should be no debate. It's wrong."

This statement is going into dangerous, dangerous ground. If we accept this as a standard, then who would be next? Complete quadriplegics? Down's syndrome babies? I am NOT advocating aggressive life support measures for all infants, in all situations. But I am saying that each infant should be evaluated in his/her own right.

Back to the original post - I don't feel that it was wrong for both of the Neo's involved to state the facts and their opinions on the facts to the parents, but for either one to pressure the parents in any way is wrong. Also they need to clearly state what is proven FACT, and what is OPINION. Like many of the other responders to this post, I too am the parent of an NICU survivor. My son was a 26 weeker that suffered a bilateral III(left)/IV(right) IVH at 3 days old. We were given this information by the Head Neo, who had the beside manner of Attilla the Hun. He very clearly thought that saving a child with a high likelihood of a disability was wrong. His opinions were such a large part of the conversation, that the facts of the situation got lost somewhere along the way.

Our eventual decision did not please this particular Dr. We chose, in essence, to allow our son to choose. We adopted a "do no harm" policy. Any medical decision he was faced with we asked the question "Without this treatment will he die?" If the answer was no or maybe, then we always opted for treatment, because without treatment, then even more brain damage could be done. For us, it was 100% the right choice. Our little guy had a totally uneventful NICU stay ( with the noted exception of the bleed) He came home a full month before his due date. He is now 9 years old.Yes, the bleed took it's toll. He has a dx of SQCP. He does not independently sit, stand, or walk. - These things do not prevent him from being a productive member of society. He is a smart, funny, very verbal 4th grader, into Yu-Gi-Oh, videogames, and sports. And yet, if we went back to see the Neo after all these years, all he would see is failure and a wasted life....

11:45 AM  
Anonymous Anonymous said...

In response to terri/w2- No parent chooses or wants a life of pain and disability for their child however are you really that emotionally detached from your child that you wish she was dead?
I truly can't make sense of this??

I am the mom of a 28 weeker who had a severe bleed and will likely be diagnosed with cp but I can't imagine my life without her. The potential cp diagnosis is scary and I won't deny that I've shed a number of tears but that's my prob, something that I need to get over (I don't have cp). My little girl is now 8 months old corrected and she's completely happy. She smiles and laughs and coos and it's becoming apparent that she has quite a little personality. She can hold things and grabs for things and reaches for me when she's being held by someone else. She can use a sippy cup and grabs for the spoon and tries to feed herself while being feed. She's on the verge of being able to sit up on her own and I believe someday she may walk (maybe with some sort of adaptive device??).

I'm not a religious person and I don't think heroic efforts should be made to save every baby but you really don't know what the future holds for a lot of babies who've had bleeds. I read a number of blogs of kids who've had bleeds, who have been diagnosed with cp and who are running around enjoying their lives as I type this.

Just for the record I was never given a choice about efforts made to save my baby. She was only on the vent for about half a day before she was able to breath on her own. The neonatologists on staff didn't order an ultrasound until day 3 of our nicu stay and were completely shocked that a bleed had happened and such a severe one at that. Our nicu stay was pretty uneventful aside from the bleed.
I know in the future we may have many obstacles to overcome but at least my daughter is alive and doing well. If people like you got to call the shots then I never would have seen my little girl smile, or heard her laugh, or all the many things that she'll continue to surprise me with in the future. I can't imagine.......

1:25 PM  
Blogger Nancy said...

"Grade IV IVH children should NOT be kept alive, period end of story. There should be no debate. It's wrong."

Whoa! Well that sure is a strong blanket statement to make. According to this logic, then why stop there? As a previous commentor has said, then let's also do away with the children who are quadrapalegics. And really, why stop there? We can also do away with anyone that ends up with any sort of traumatic brain injury right? Because really, why should we allow them to live as they becomem such a drain on society and their parents and, well, everyone and everything really.

One word...genocide. Maybe that wasn't your intention in your comment. Maybe it warrants further explanation. But really, to say that no matter what if there is a bleed of grade IV then the life support and any medical measures should cease is illogical to me. Even though the odds of growing up without a disability are slim, there is a one in a million shot isn't there? and that's what those parents are banking on. Who are we to take away their faith and hope? Not to mention, some parents still dont want to terminate support regardless of having to raise a severely disabled child. It's like saying, forget death row for years. Let's just terminate them all. And if one turns out to be innocent, well that's ok because prevented all of those guilty people from living. So that one innocent person will have to sacrifice for the good of all the others.

Maybe your comment wasn't intended to be as harsh as it is being read. If it wasn't then my sincerest apologies. However, if it was, well I am going to just step away from the soap box on that one.

4:04 PM  
Anonymous Chris and Vic said...

For the sake of argument, let Grade IV IVH be regarded as meaningless---it actually is the equivalent of a stroke.

Rather, let's debate the meaning of "futile treatment" and "inhumane" and "Persistent vegetative state," as criteria for prolonging life (or not). Would the debate be any different?

The 2 neos in Neonatal Doc's story argued on till the child in question was able to be removed from the vent and breathed on her own. As time goes by for any sick infant, the parents bond to the infant, and some things/decisions may take on a different quality because of the bonding.

Those arguing on this blog have bonded to their children for months or years . . . One can look at bonding many ways---maybe when you have bonded well, you lose your objectivity, not so able to decide what is in the child's best intersts (most humane)---because our own need for the child (part of bonding, to be sure) is mixed in.

Those who are at peace and have come to terms with their childrens' disabilities, I applaud you. But there are others whose lives are in a shambles---family break-up, loss of career/income, medical bankruptcy, ongoing conflicts with doctors and schools, lack of respite care, dependence on welfare, etc., etc.
---due to spinning out of control in an effort to care for a child with severe disabilties and medical fragility. (Teri used these 2 criteria . . .)

Even in the bible, Job (and others) say that it would have been better if they had not been born. The slaves said it, too. This stance is a legitimate and very human and universal keening cry. The people who say it are pressed to their limits. They are telling us about their profound grief and pain. They are warning others how impossible life may be raising a child with severe disabilities. We can listen, just listen, and imagine ourselves in their shoes . . . and accept what they say as their truth.
Chris and Vic (CAK)

5:29 PM  
Blogger neonataldoc said...

There is so much we could say about this topic.

Helen, it sounds like your situation was a nightmare. I'd like to think that we've made some progress in decision sharing with parents in the past 31 years, but I suspect it varies from NICU to NICU and from neonatologist to neonatologist. I know there are still some doctors out there who see themselves as imperial.

Chris and Vic make an excellent point about knowing your audience. It's true, some people can handle a lot of information and want to be involved. Others are,as they say, less educated and less asssertive, less willing and/or able to handle information.

Regarding the statement that grade IV IVH children should not be kept alive, period, I think some of the subsequent commenters point out real problems with that. I don't wish a life of disability on anyone, or a lifetime of caring for someone with a disability on anyone, but it seems that at the least parents should get a choice about whether to remove their child with a severe IVH from life support. There are advocates for the disabled who would go further that that.

5:52 PM  
Anonymous Claire said...

That Terri would use my words "unbearable suffering" to support her case against heroic measures illustrates why I am so uneasy about this problem area. Taken out of context and used selectively words, figures, statistics can be used to support any case. Few people would argue that they are in favour of unbearable suffering, but the point I am struggling to make is - who is to define what is unbearable? Most of us - carers and sufferers - live outside the mainstream with lives we would not have chosen, lives which, generally, are made more difficult than they need to be by society's inability to cope with difference. The case against "saving" premature babies sounds so rational, but it begs too many questions, and depends on too many highly individual definitions of quality of life

3:49 AM  
Anonymous Helen Harrison said...

To Claire, Nancy, and anonymous 1 & 2:

"Terri w/2" is currently in the midst of a serious medical crisis with her (adult) preemie daughter, but here is a post she sent to another group several days ago which will give some idea of where she is coming from.

From Terri w/2:
I just arrived home from my daughter's bedside 2 hours away in the PICU. She underwent surgeries yesterday - one to replace a baclofen pump, the other where she was surgically opened from the back of her neck down to her buttocks to have a rod implanted in her back. She is currently on a ventilator, she has 3 IV's - one in each arm and one femoral. Her only "good" arm is tied to the bed so she does not dislodge the IV's the ventilator, the foley, etc. etc. The IV pumps are lined up in a row with perhaps 6 different meds and solutions flowing in to her. She was heavily sedated throughout the night (thankfully), but today the weaning of the ventilator starts - which means she must become less sedated - which means she will be in horrible pain.

This is so wrong.

1:02 PM  
Blogger Nancy said...

I am not discounting "terri w/2"s traumatic situation with her daughter. I merely found her statement regarding children with grade IV IVH objectionable.

It is obvious that this topic stikes a cord with any parent who has given birth to a preemie, regardless of the outcome. The strong feelings that we have regarding the topic are often based on our experience. Following along the lines of that logic, it is obvious why she has the sentiments she does regarding children with significant bleeds. Based on that same theory, it is obvious why my feelings on the subject are what they are.

My response to her was not to dispute what she is going through with her daughter, but rather to dispute a particular statement that she made. I don't see the issue as merely black and white, as I am sure many others don't. There are definite shades of grey. Her statement came across as a definite, no questions asked, flat out solution to an issue. Forgive me, but I can not see how that can be achieved with such an issue.

I can't say that I understand her point of view, as that is not my experience with my daughter. Am I empathetic to her situation? Absolutely! Do I share in her beliefs because of her situation? Absolutely not. Which is why I posed the examples I did.

4:00 PM  
Anonymous Helen Harrison said...

To all:

I may also need to be absent from this discussion for a while. Our son, Edward, just had a follow-up CT scan this morning and the news isn't good.

It looks like we're in for another "surgical marathon." We've had about 15 over the course of 3 decades, and we've been rather "lucky" all things considered. So many other Grade 4 IVH children have had it *so* much worse.

We'll know more after meeting with the neurosurgeon tomorrow morning.

I'll try to keep people posted when I'm able.

Helen
Mom to Ed, age 31 years, hydrocephalus, MR, CP, Autism, Severe vision impairment, and much, much more...

4:58 PM  
Anonymous Claire said...

My motives in joining this discussion were partly to try to give the perspective of one mother of a premmie 30 years on, on the grounds that it is the long term outcome that is a main concern, and to challenge the received wisdom that the lives of the disabled and their carers were not worth living by insisting that mine is, thank you very much, I think my daughter's is, and I would not thank anyone who tried to relieve me of my "burden". Obviously, parents who watch their child suffer - the worst thing in the world - are going to have a different perspective, and they have my heartfelt sympathy, and my respect for whatever decision they feel to be right. I do have a problem with the idea - possibly enshrined in the American Dream - that people have a right to a guarantee of a life without suffering. It is part of the human condition; how we deal with it is a highly personal and individual, how much we get of it is in the lap of the Gods. It is a human and admirable thing that doctors, among others, should try to avoid or alleviate it but in my opinion there cannot and should not be absolute black and white answers to such difficult grey areas. It is, in a sense, an impossible conundrum. If a young mother faced with this kind of decision were to ask me what she should do, I would simply not know what to tell her. Pollyanna-ish certainties have no place, nor does doom and gloom. A realistic assessment would be nice, but isn't available. It is too complex, too uncertain, too full of imponderables. Each individual, doctor or parent can only look into their own hearts and beliefs and do the best they can case by case.

6:10 PM  
Blogger neonataldoc said...

Helen, best wishes to you and Ed.

Claire, very well put.

10:04 PM  
Anonymous Helen Harrison said...

To Neo Doc:

Thanks for your good wishes! I am very grateful for your kind wishes.

My own fervent hope is that the neurosurgeon will agree to temporize for a bit longer. But the scan today showed Ed's ventricular dilation had reached the point where the sulci were obscured. This doesn't sound good to me, although Ed's behavior has been close to normal the last few days.

To Claire:

I appreciate your acknowledgement that these are difficult issues.

But, as a good American, I must take issue with the following comment you made:

"I do have a problem with the idea - possibly enshrined in the American Dream - that people have a right to a guarantee of a life without suffering"

No one is asking for, or expecting, guarantees of a life without suffering. But most people do not think we should go out of our way to use medical technology to *increase* suffering.

And this sentiment, I would further argue, is at least as prevalent outside the US as it is within it.

In my view, aversion to suffering is a *human,* and not a peculiarly American, aspiration. Most humans think suffering is bad (see Book of Job, passim)

Much of the practice of law and medicine [in the US and abroad] is predicated on the notion that disabilities and chronic illness
impose real and significant harm. If a lawyer or expert witness were to claim in court, that a client who had been left retarded, paralyzed, blind, or chronically ill had suffered no injury, or that injury involved no suffering, or that suffering did not matter... well let's just say that no jury in the world would take such an assertion seriously.

10:59 PM  
Anonymous Claire said...

Helen I do not seek to change your mind. You have firm views, to which you are entitled. I respect your absolute right to hold them, I am a bit more concerned about your view being widely propagated and accepted as the only view. It is, largely, the “common sense” view – it would terrify the wits out of my hypothetical new mum. I am also an English teacher, and having some difficulties with your use of language. The statement “The use of medical technology to increase suffering” resembles, in form, the statement “The use of sugar to sweeten tea”, but it only appears to resemble it. The outcome in the second is invariable, in the first, highly debatable. It is the core of this debate – what is the balance between the potential for harm and the potential for good. Some babies may be harmed and condemned to suffer, some may be helped to avoid suffering, and unfortunately it is not easy to tell which is which. To you, it is clear cut, for me it is less so. And yes, of course, most people think suffering is bad; I’m not exactly recommending it! Just suggesting that it is an inevitable part of life and sometimes balanced by other more beneficial emotions. As for my reference to the American Dream, this was not an aspersion – just an acknowledgement that geography does have some relevance here. In the US, questions of insurance, highly advanced technology etc. may be more relevant than they are here, with the remnants of a “welfare state” and a national health service. As for the question of whether a jury would consider my daughter “harmed” – well of course they would. They too would take the common sense view. Her brain doesn’t function the way it should, she will never have a normal life. She is happy. She has a good life. She is happy the way a ten year old is happy – her needs are simple and easily met. She loves, and is loved, finds joy in little things. The “common sense” view finds that idea repellent. Personally – very personally – I do not want any part of a view that says she is a drain on resources and has no right to live. If she were to be suffering physically or mentally, I would feel differently, I suppose. Would it negate, cancel out the good? I can’t get my head round that.

I wish you well.

5:24 AM  
Anonymous Anonymous said...

To Helen, Teri w/2, and all the other readers in similar situations:

My heart goes out to you, and I think that your situations illustrate that not all solutions are right for all people. You are 100% right. I don't live your life, and I don't live your children's lives, and I don't have the right to tell you if they are worth living or not.

My point from the other side of the coin is that you do not have the right to tell me that my child's life is not worth living. Is it the life I would have chosen for him? Of course not. Is our life harder than it "should" be? Most certainly. But each and every life has value. My son is no exception.

3:33 PM  
Anonymous Helen Harrison said...

We are back from the neurosurgeon's office where we decided that, despite the latest scan, we will watch and wait for the time being.

To Claire: You say that as an English teacher you have difficulty with my use of the language.

As an author and editor, I am having problems with your reading skills and debating tactics. You put words in my mouth I have never said. You habitually misread my statements. Then you attack your own misunderstandings and fabrications.

My statements in no way imply that medicine is *only* used to increase suffering, but people*do* tend to object to it when it *is* used that way. (And why, exactly, do you have such a strong aversion to "common sense"?)

You and I may disagree on the balance of pain to benefit of a treatment regimen that could lead to decision-making. And that is fine with me.

My only point throughout these discussions has been: when reasonable people disagree, the patient or the patient's surrogates (the parents, in the case of infants) should have the right to decline treatment. They should also have the right to *insist* on it.

To Claire and anonymous: I have *in no way* commented on either of your children, and would never presume to do so.

5:52 PM  
Anonymous Claire said...

Helen: You and I could argue endlessly about your use of language and my reading skills but it would add little to this discussion. Both are affected by the very limited space available in this kind of forum. We are actually, or appear to be, in agreement on one substantial point: decisions should be made by individuals, not by laws or committees. Where we appear to differ is in our views on quality of life, and what information should be used to inform those very hard, near impossible decisions. I believe you appealed earlier for parents to be “educated” on possible outcomes, to think in advance about how they would cope. This is clearly desirable, but not too easily achieved. How are strung out parents filled with fear and grief and disappointment to make these decisions? Cold statistics and a prevalent view that profound disability is absolutely inevitable (when it isn’t)?. A common sense/received wisdom consensus that the lives of the disabled aren’t worth living? My contribution to this discussion has been intended to convey that I do not believe that to be true, and I have a very personal dislike of the idea that only the perfect should survive. Every prospective parent capable of thought fears this scenario. I have lost count of the number of times I have heard “I couldn’t do it.”, and my reaction to that ranges from sadness to irritation. Prevent certain suffering? Of course. But how certain is your certainty? Where is the line, and is it easy to draw? If it were, there would be no need for this discussion.

4:53 AM  
Blogger terri w/2 said...

It's first and foremost about suffering. .

I see from earlier posts this week that my comment about preemies with grade IV brain bleeds has made me somewhat of a pariah -being interpreted as genocide, me being emotionally detached from my daughter, etc etc. Wow!

I will grant that I was perhaps more reactive than usual considering our personal circumstances presently, and I should clarify. .

Micropreemies with grade IV IVH's have an extremely poor prognosis that involves (most likely) severe disability, but *most of all* intense ongoing suffering. I'm speaking not only from my personal experience, but from seeing others who have walked this path with me. In my many years of having my daughter in special education, I've seen these grade IV micropreemies in school, (all severely, multiply disabled and in wheelchairs, non-verbal, seizures.) I've talked with their parents through support groups, and the univeral thing that parents are most concerned about (as I am) is the suffering our children have had to endure. . .in the NICU, and the years after with multitudes of surgeries - fundoplications, g-tube placements, dislocated hips due to severe cerebral palsy, tendon surgeries, repeated shunt infections and surgeries, massive therapies, hospitalizations for intractable seizures, all in an effort to fix the ramifications of the severe IVH. The disability part of this is very much secondary though to suffering, although the severe disabilities need to be included, as often times they are the cause of on-going suffering - as with severe cerebral palsy.

Do some micropreemies with severe IVH's avoid suffering? Maybe. But I do not belive this is the rule, but the extreme exception.

I will back step a half step here and say it should be the parent's choice...although parents should be made aware that the NICU experience for these kiddos is going to be most likely pretty horrific. .(my daughter spent 5 months in the NICU, had over 500 heel sticks to the point her feet began to as one nurse said "break down" as well as numerous surgeries, one we know of without anesthesia). Suffering? Yes, she suffered. She continues to suffer. Her body is covered in scars. She's not the only one.

Parents should know life after is going to involve repeated hospitalizations, most likely marriage collapse, one parent (usually mom) becoming a full time caregiver, as well as extreme financial strain on the family's resources. It should be their choice, but only with extremely good counseling about this, and presently, it is not happening in many NICUs, and due to the BD laws, parents (like me) were refused to withdraw lifesupport even though we knew it was the kindest thing we could do. More than ever, after 21 years, I believe it is the right thing to do.

It may surprise these readers here to learn that I am Catholic, and I believe the Catholic church had it right when they put forth the directives a number of years ago that life support could be discontinued in cases of "extreme burden" which included "suffering" - although the Catholic stance has been somewhat aligned with pro-life beliefs, their original directives on this is *very* common sense. I believe this is right. My extended family is extremely pro-life, and even they do not agree with what my daughter has gone through. She is certainly not the only micro preemie with a grade IV IVH out there who endures horrific suffering.

Just to be clear - I am not advocating for killing people based on disability as one responder tried to accuse me of, however, when the NICU treatments involve such horrific suffering (and especially with micropreemies with severe IVH's) parents should have a choice based on GOOD information about what life is like for many of us, not just those whose kids are functioning moderately well.

I believe the decision to withhold or discontinue lifesupport in these situations is the most selfless act of love a parent could possibly do. . as in "I love you enough not to want to subject you to this simply to keep you alive for me." I loved my daughter enough to make that choice shortly after her extreme prematurity and subsequent IVH. That decision was denied us by her neonatologist, and, there isn't one day in the past 21 years that this has not come into my thoughts. How very wrong he was to do that to her, to us.

Should I face a medical crisis of this magnitude myself, I would hope someone would have the good sense and love me enough to withdraw life support from me. I would never, ever want to endure what I've seen my child endure. (My advance directives will hopefully insure this to happen).

8:04 AM  
Anonymous Chris and Vic (CAK) said...

Here is a true story about a child with spastic quad CP, and the psychological suffering she experiences:

The child in question, a female, was able to walk with the help of AFOs and walker up until her mid-teens. She then was unable, and has been in a chair ever since. When she lost her ability to walk, she railed at her mother, a nurse colleague of mine, who had always told her that CP is static, that it does not get worse over time. The teen said to her mom, "You told me this would not get worse, but now I cannot walk!" Her mother tried to explain how her daughter's wasted muscles could no longer support her weight and height which was increasing, but that the CP was not really getting worse---it was just that her muscles/balance could not keep pace with her growth into adulthood. This is the truth; it makes sense, and the girl was certainly intelligent enough to grasp this explanation. But the explanation did NOT decrease her rage and her suffering.

So, my point is this: there are several kinds of suffering that a child and her family may undergo. Imagine you or I losing our ability to walk--implying a loss of independence. Imagine the soldiers coming back from Iraq who can no longer walk. How does it feel, emotionally? When do you get over it, if ever?
How does it change the course of your life, your ambitions, your abilities, job options, etc? Who is there to support you in your grief and anger? Do you get therapy? Do you get a handicap-accessible home or apt? Do you now need help to bathe or toilet or get in and out of a vehicle? Can you manage with a "regular" car or will your family need an uber-expensive van, equipped for wheelchair use?

There are layers of suffering here. Suffering changes your head, alters your dreams, drains you, makes you depressed and anxious. It would do that to any one of us.
It doesn't matter how good your attitude is. It will lay you low---how low would you go?
Chris and Vic (CAK)

10:47 AM  
Blogger terri w/2 said...

Chris and Vic - I agree with your post entirely. The difference I see though between soldiers coming back from war who are disabled, is that they receive support from our government that ensures their future care - VA Hospitals, Veteran's homes, etc. In addition, I had read an article once about a monthly stipend of several thousand dollars for those soldiers who are permanently disabled and unable to be employed as a result. This is very fair and should be a given. .

On the other hand, our government passed the Baby Doe laws, requiring saving of infants who otherwise would have died. The support, however, for families in these situations is not there. And if the support IS there, there are massive waiting lists. Support is there, I believe, if people adopt or do foster care, but if it is a biological family caring for a severely disabled newborn/child/adult. . there is little by way of help in building that wheelchair accessible home (which we've done) or the multitudes of other expenses (including loss of income and benefits when one needs to become a full time caregiver for this child). It's what I like to call the "save 'em, but don't serve 'em" mentality. I know lots of women (especially) who've had to leave their full time jobs and benefits to stay at home forever - at least until they completely burn out, and place their child, or, until their child dies. Then they re-enter the workforce with very dated skills or, as in my case, return to school for a second career. Either way, the fastest way to the poor house is to have a severely disabled child.

7:28 AM  
Blogger ellie said...

Oh good Lord. I am so glad that when our baby died (from massive brain damage incured during birth) we simply had doctors who gave us the facts as clearly as possible and let us decide what to do. It would have been much more painful had they proferred -opinions- on such a deeply personal decision.

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1:40 AM  

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