Monday, March 21, 2005

Terry Schiavo...the other side of the story.

I sent my Terry Schiavo blog to a handful of friends, and I got a surprising response. One of my friends, who is a fairly devout Christian is also involved in the hospice care industry, and had some interesting responses.

I am posting her responses and my thoughts to them, just to share how the other side views this....

******

Thanks for the input . While I have some strong opinions, I do also feel obliged to hear all aspects, and if its ok, I'd like to forward your response to some friends who are discussing it.

You said:

After 15 years the window of opportunity for neurological rehabilitation is closed but for a miraculous act of God. Consider - Man can now get in the way of God calling His children home by the fact that we perform resuscitation in the first place. Seeing the situation Terri is in, her functional progress would be VERY limited. Her hands and arms are contracted - a condition EXTREMELY painful to remedy - so painful it is rarely if ever worth it. And that is just in terms of gaining flexibility. Active, coordinated, purposeful, intentional, movement is another story. In general the window we look at is 3 to 6 months after incident for the dramatic recovery, occasionally for another year - maybe - small gains can happen, but usually not functional gains, hence the dismissal of services noted on the website.


***Yes, that was in line with my thought, and that's why I do allow that the family is likely living on optimism at the cost of reality to a degree.


What is more likely than Michael refused therapy is that he refused to appeal her denial of coverage.


***I don't know, the sites I perused only indicated therapy was recommended but he rejected it.


When looking at the ADL's - activities of daily living, we hope for the ability to roll over in bed, sit up, transfer to a chair hopefully with minimal assist. But a min. assist still requires 24 hour care. IF someone can get out of bed next we look at can they do any self care - feeding, brushing teeth, dressing, etc. Lastly we look into can the person relate to others? So much of life (living) is relationships - what makes life worth living? It isn't moving, dressing or bathing. Terri's current state is dependent in all adl's. Since she has a feeding tube inserted, that tells me her debilitation includes that she cannot even swallow. In the case of severe brain injury - it is hard to tell what responses are purposeful and controlled and not. But from seeing folks like Terri - the chances that she has any awareness are slim.



***Actually the swallowing issue is in question. The family and some care givers have testified she has some small ability to swallow. According to one site, one point of contention that has not gotten media attention is that the order applies to the feeding tube only. The husband specifically ordered no mouth feeding in a separate act, leading me to wonder if some reflex swallowing could happen.

The reality of a day in a nursing home for patients like Terri is pretty sad, and frequently painful. Diaper rash, bedsores, contractures, pneumonia, bladder infections, the list go on and on. It isn't a pretty sight.


***Yes, I had read up on the infirm, and its not pretty at all.


I think this battle isn't about a living person so much as it is about control - the spouse vs. the parents. This has been a 15 year long court battle from the get go. Terri is innocent alright - the argument may be over her - but she is, as you say, a pawn.


****Yes, that seems very apparent.

I remember Terri's case from way back - similar to the Karen Quinlan story. The courts have been debating whether feeding tubes are 'life support' for years. There really is no easy answer - other that it is the toughest decision for anyone to have to make.


***What bugs me is that voluntary euthanasia and assisted suicide is illegal, but stopping feeding is ok? How is there an effective difference?


In Michael's favor - remember his life has been on hold as long as Terri has been injured. He cannot go on with life as a man with his wife. There is no marital relationship - and I don't mean just the physical - but the midnight chats, the best friend who you share all with. For him it's all gone, not a hope of it ever returning, she will never be a equal partner. Since he hasn't just divorced and gone on with his life says a lot to me about his concern for Terri's wishes.


***I tend to disagree....he has moved on, is living with a woman and has two children by her. Since the families would have taken full support of her had he consented to divorce her, then he chose not to because he either has a strong sincere belief in supporting her wishes, or he has another agenda. Both scenarios have merit and are possible, and no one knows but him. But the vision of noble sacrifice is somewhat shallow when he has a new family he is already invested in.

I confess I stand on the side of the spouses rights. Yes a tough choice but he wouldn't be the first to do it.


***No, I certainly wont dispute that.

Knowing the medical establishment - I strongly believe Terri would have received therapy initially as long as she was progressing. Even Medicare was much more flexible 10 years ago about how much progress was allowable.


***The timeline says they initially saw some improvement and recommended more therapy, but Michael instead placed her in a nursing home. No indication as to whether insurance was a factor. Her medical settlement would not come in for a couple years, so its possible.

Not the case anymore. I am not aware of treatment that would have any significant impact on returning Terri to her prior self. In support of her parents I can see how parents would be content with their child in a dependent condition; it is how their life began. It is hard to say goodbye to one's child, especially when you have seen them go from dependent to mature once, but independence isn't in the picture for Terri - ever. In skimming the site you referred to, I see a family not wishing to let go - and possibly even hoping for some of that malpractice money for themselves? Obviously the court stuff has eaten up a LOT of money on both sides. I wonder if the argument really is about Terri or money - or just winning at this point. Their stand really doesn't make sense to me since I can see the other side of the situation.


***Standing in the middle I think both sides have merit. The family may want to just continue loving their daughter. The husband could just want to discharge his responsibility with integrity. And yet both sides could also be suspect.

The bottom line - get an advance directive and keep it on your person. An advance directive in your medical chart at your doctor's office doesn't keep you from being resuscitated in an ER across town. We had a patient who had that happen - he had an advance directive - was resuscitated by law when it wasn't available - when it became known, a distant relative had to make the choice to remove the tube or not. In the end the tube was removed and he died quietly a few days later. The death from having a feeding tube removed is not horrific as the site suggests. The patient is watched closely by hospice care - often steadfastness and other medications are given, the patient goes to sleep and passes peacefully. I have watched it happen. More than once.



***If no other good comes from this, at least there might be raised awareness of this. I will note that on a legal front I oppose it because there is no clear proof of her intent, and the law is supposed to be bound by proof. His arguments about her intent are not necessarily persuasive. I
also am suspect of the timeline. He waited until after the monetary settlement was given before he tried to end her suffering, something that does not help his credibility. He claimed on Larry King tonight that he was just holding hope and it took that long to give up, but that brings us back to the question of why he did not advance her therapy when there was a reasonable hope of it doing some good.

OK here's something to rant on - or just think about...Why not give a small wafer and some juice? Because if Terri cannot swallow, and she aspirates on the wafer or juice and gets pneumonia - it's a lawsuit for the care facility since they know she cannot tolerate anything by mouth.


***First, the monsignor indicated he would have used a crumb only so its doubtful that would have been an issue. Second, she been receiving it weekly for some time before this, so this was not a surprise move. If the family and staff were right about her limited ability to ingest and swallow, it also would have been a minimal threat. I might also point out the absurd contradiction of worrying about someone choking whom you are actively starving to death, but I wont. (smile)

....And yes -the Church opposes the removal of life support yet don't they support medical care to extend existence? Don't they support medical intervention to prevent nature (God) from taking its (His) course and allowing people to die at the time of injury?


***I am sorry, but you lost me. I don't see a contradiction between the two statements. I personally believe in taking any reasonable action to prolong life. God works miracles in science too.....

Thanks , I really got a lot of insight here and I hope you won't mind
me quoting you.

Karl