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Author Topic: Not Dead Yet - Two Stories and My Initial Thoughts
sndrake
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I've taken the liberty of starting a new "Not Dead Yet" thread. I think this introduces a different theme and context than the one this previous thread did.

This past week, the NDY blog has featured and/or linked to two different stories that present a different picture of the medical system than most people deal with. I don't know if it's rare or if it's common - no one, no matter what they say, can know for sure, since things in the stories aren't supposed to happen at all.

The first is a story by Terrie Lincoln, reproduced on my own blog, published on the CDR blog, and featured on the "How We Die" site (more on that last one later).

Twelve years ago, Terrie was in an accident that left her with a broken neck. She's a colleague, working in the same building that my office sits in. Here's an excerpt from the story of her family's struggles with the medical people during Terrie's recovery:

quote:
The surgery turned out well and I started recuperating. While I was lying in the hospital bed that did not rotate because they did not want to injure me more, the doctors would come in and ask my mom if she was ready to pull the plug on me. “Why would I want to do that?” she would ask? The doctors answered, “What kind of life will she have--- she won’t. She won’t be able to dance, walk, work, have a social life, or be independent.”
I hope anyone who is interested reads the whole account. It's quite disturbing.

Shortly after that went up, William Peace, who blogs at Bad Cripple, wrote something about some of his own scary thoughts and memories from thirty years ago:

quote:
I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied "think about it". Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. "They were allowed to die with dignity" she told me. I lost a lot of sleep that night wondering about the so called "quality of my life", what doctors and other medical professionals thought of my existence and shuddered to think of the many who would die not of a high level SCI but a social assumption that their life was not worth living.
Finally, I posted some of my own troubled thoughts as a result of these two stories. Those thoughts are still a work in progress. I also provided the backstory on how the story of how Terrie Lincoln getting to live got included on a website devoted to stories of how people die.

Here's an excerpt from the post:

quote:
The trouble, I think, is that medical professionals are no more moved by research and factual information than the general public. What sticks with them are the worst memories - the memories of people dying after months of rehab/recovery; the worst points of adjustment to the realization of newly-acquired disability; the stressed-out and maybe cash-strapped families.

For hospital folks, there are no experiences with the power to provide balance to those kind of experiences and the emotional impact that comes with them. Discharges of patients are an unfinished story, with no closure, let alone a happy ending.

It becomes understandable (but not condonable) that some would jump to the assumption that it's just better to get a peaceful, dignified death than to go through medical hell to live a life with a significant disability.

Terrie's story has gotten a lot of attention in the disability community over the last few days. We're hoping to flush some more of these out. We're pretty sure there are more of them out there - the trick is to find people who actually survived the experience.
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Kwea
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I work in the medical field, and I can tell you that that story, where it was said that MD's make those decisions, is simply false. Usually it is the family, and barring a legal document stating a DNR order all possible attempts are made to save each and every patient.

I have seen it as a nursing student, as a family member, and as an EMT, and nothing I have ever seen bears any resemblance to anything described there.

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AvidReader
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I'm sure like any organization, each hospital has its own culture. Some probably do value each life and work to save them.

On the other hand, last weekend Garrison Keilor had an article about overhearing a young woman and her friends laughing about her mother overdosing patients on morphine without their consent. Scrubs did an episode where Carla gave an overdose of morphine to a patient who asked for it.

Someone must be doing it, or where would the stories come from? And if you don't seem like you'd go along with it, they certainly wouldn't do it in front of you.

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Farmgirl
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quote:
Originally posted by AvidReader:
Someone must be doing it, or where would the stories come from?

That sentence makes absolutely no sense! That is like saying everything fiction that has ever been written "must have happened at some point - or else how would the author have thought of that story?"

People might THINK some of these things, but that doesn't necessarily mean they have actually acted on them, or that they have taken place.

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AvidReader
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It was not well phrased, I admit. But it's not like we've never heard of nurses who murder their patients before. It's made it onto cop shows and even sit-coms. It's either the ultimate urban myth, or it does happen.

Tru tv talks about female and male nurses who kill their patients. Katrina doctors were tried for killing their patients. This guy did his dissertation on it.

I typed "nurses who murder patients" into Google and got 2.1 million results. The front page seems to be largely news stories. While I certainly hope most medical professionals would be horrified at the idea, I'm not willing to completely discount the idea that some of them aren't. And some seem willing to do something about it.

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Kwea
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It FAR more likely that the statement was made by an ignorant nurse, stating her biased opinion. The mission statements of every professional orginization states that all life is is worthwhile.

MD's may offer an opinion to the family, but if there is no DNR order (Do Not Resuscitate) it is ILLEGAL as well as immoral to make such judgments based on that type of information.

It is the families decision, although the MD's will offer a professional opinion that may seem to be almost the same thing at times. It's a judgment call, and not one that is easy to make for anyone.


Also, keep in mind that medical professionals may see MORE of ALL types of these injuries, and probably have a better idea than you think of the chances of complications, further injury, and potential for return visits than someone who only works with people who successfully transition. Some might call than bias, other call it being informed....it always matter WHO you are talking to as well as what they are saying in these matters.

I am not taking a position on the right to die movement, it is personal, far too personal of a decision for me to chime in most o the time........to be honest, my discussions here at Hatrack with sndrake have changed my opinions on a lot of this, and I consider those discussions to be some of the best, most civil discussions on a serious topic that I have ever had. [Big Grin]

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Tatiana
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sndrake has changed my opinions as well, and caused me to see how society has a tremendous double standard on the value of life for disabled vs. abled individuals.

I think the stories are interesting, and the whole subject definitely needs more scrutiny and public discussion.

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Mrs.M
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Stephen, I just wanted to let you know how much I appreciate what you are doing. We have many of the same issues in the preemie community - I know several parents who were strongly encouraged to take their babies off respirators and "let them go." These children are all home with their families now. We were so blessed to be in a NICU staffed with aggressive and loving doctors who never give up on any baby that I was shocked to find out that this isn't the norm.
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Kwea
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I think it IS the norm, Mrs. M. I have never heard of anything like that, and I have lived all over the US. I am not saying it doesn't happen, but that is the minority by far.
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sndrake
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Mrs. M and Kwea,

I don't know how prevalent those attitudes are, but it's not hard to believe you'd run into it in some places.

In the 1970s and 1980s, several prominent hospitals in the U.S. were quite public (in journals, anyway) about having policies aimed at ending the lives of some infants with spina bifida and other disabilities.

Over the past few years, there have been a number of studies published comparing the attitudes toward the "quality of life" of surviving preterm infants - contrasting the attitudes of medical staff vs. family members. In each study the contrast is striking - the medical professionals leaning toward believing that the children would have been better off dead. The families - most of them - believe otherwise.

Oddly, I just did a quick search and haven't found a recent such study in the U.S., but did find a few that remarked on the lifelong costs of the children born prematurely (many have disabilities).

A few years ago, I referenced a Canadian study in an opinion piece that was published in the Hastings Center Report. Same trend.

How's that work out in real life? The recent case of Kaylee Wallace, a three-month old girl described in the press as "dying." Also a potential organ donor.

It's kind of involved, but the short version is this: News hit one day that a young girl was "dying" and was to be the savior of another seriously ill girl. Kaylee Wallace had Joubert Syndrome and her breathing stopped at night. Her parents announced she was to be taken off the ventilator and her heart would be harvested under the "donation after cardiac death" protocol. (My friend and colleague Dick Sobsey refers to this protocol as "Schrödinger’s Ethics")

The attempt at organ harvesting failed because Kaylee continued to breathe even after the ventilator was shut off. The news announced a peaceful death for the girl would again be attempted that night.

This blog post is probably the most important thing I have personally written all year. It was sent out quickly over blogs and emails to probably over a thousand disability rights advocates and activists in Canada. The analysis I wrote and the questions I posed got sent to the press, the hospital - and even reached the parents. Kaylee Wallace survived.

It was the most intensive piece of research and analysis I've done in a matter a few short hours. The clock was ticking on that one. Fortunately, it didn't run out on Kaylee. [Smile]

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sndrake
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quote:
Also, keep in mind that medical professionals may see MORE of ALL types of these injuries, and probably have a better idea than you think of the chances of complications, further injury, and potential for return visits than someone who only works with people who successfully transition. Some might call than bias, other call it being informed....it always matter WHO you are talking to as well as what they are saying in these matters.

Kwea,

in Terrie's case, the professionals weren't arguing about complications, but that Terrie herself would not want to live that way.

And - repeating myself - there *is* research that indicates that medical professionals have much lower expectations for the quality of life of individuals with spinal cord injury - than either the general population *or* the people with SCI themselves.

I'm not suggesting that these people are evil - just unable to separate their own emotional reactions to suffering from their own belief in their "objectivity."

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The Pixiest
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sndrake: so what happened to the other girl? did she die?
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sndrake
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Pix: There's been no word on the other girl. And there probably won't be. What horrified the hospital - and a number of bioethicists commenting - is that Kaylee's parents went public.

From what we can gather, it was hospital staff that led Kaylee's parents to believe she was dying. It was the parents' idea to do the organ donation - and then went public without the hospital's permission or approval.

Since the first attempt failed, the girl who needed the heart wouldn't have gotten Kaylee's. But if the parents had not gone public, there would have been no one questioning if Kaylee was really "dying" or not.

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The Pixiest
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sndrake: it's easy to comment from a distance. Who knows what circumstances surrounded her case that didn't appear in the news.

And it's easy not to care about the girl who's name doesn't get mentioned.

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kmbboots
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Pix, I think her name is Lillian.
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sndrake
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But Pix, it did come out - Kaylee Wallace's apnea was treatable. The family hadn't been fully apprised of her chances for survival - some other families with kids who have Joubert syndrome did that.

Also, to reiterate, the donation to the other child was moot when this hit the news. The heart has to stop promptly in this protocol - if the child dies to slowly from vent removal, the heart can't be restarted after removal.

But yeah, I could have been wrong - which is why I posed questions rather than pitch accusations.

But the answers that eventually came out didn't justify the determination that Kaylee was "dying."

The questions also left room for it being a "quality of life" determination - which is legal in the U.S. and Canada, but shouldn't be conflated with "dying."

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The Pixiest
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http://network.nationalpost.com/np/blogs/toronto/archive/2009/06/08/baby-kaylee-back-home-her-father-says.aspx

As of June 8th, Kaylee was back home after another trip to the hospital. Lillian O'Connor was still in intensive care on the transplant list.

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sndrake
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Pix,

Repeat hospital trips are not uncommon for kids with rough starts.

Lillian's fate isn't connected to Kaylee's and never should have been.

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sndrake
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quote:
I am not taking a position on the right to die movement, it is personal, far too personal of a decision for me to chime in most o the time........to be honest, my discussions here at Hatrack with sndrake have changed my opinions on a lot of this, and I consider those discussions to be some of the best, most civil discussions on a serious topic that I have ever had.
I enjoy this too, even though it's exhausting at times. Sometimes I think maybe I've been at this too long.

The civility is a welcome break for me. In the past couple of months, I've managed to attack my audience at a conference (twice), been the subject of an attack post on a blog by a guy who hates autism (and me too, along with others), pissed off the E.D. of a statewide advocacy group for autism (or so they allege). I probably left out a few. It's been a busy couple of months.

(Oh yeah - trashed one of LaRouche's people who read something he laughingly called "research" from the audience at a conference)

OTOH, a well-known mainstream bioethicist referred to me as a "cuddly teddy bear/softie" in private email.

I am profoundly grateful he didn't write that publicly. [Wink]

Anyway, that's the kind of fun stuff I get to do to earn my paycheck. But I try to draw lines between social and work oriented interactions.

Battle is *work* for me, not recreation.

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Kwea
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And I can't say I blame you. I remember you talking about the quality of life studies last year(I think, it's been a while) and I found them very interesting, and WELL worth further investigation.

That being said, in the medical field, while you are NOT playing God, you DO deal with life and death decisions a lot of the time. There are times where it may be in everyone's best interest to make a decision that others (particularily those not personally involved) may not agree with, and some of those decisions DO result in death.

I have a hard time time processing how I am suppose to tell someone NOT to make that choice if their loved ones are in terrible pain, and if those patients have indicated they are probably ready to move on. Death is a part of life, as hard as it can be.

Not everyone who has a DNR is a quitter, or is doing anything wrong. It's THEIR choice, perhaps one of the most personal choices a person can make. Not every family member who chooses to turn off life support is selfish or wrong. I have seen first hand how torn up most of these family members are after having to make these decisions.

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katharina
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DNRs and euthanasia are very separate things, I think. There is an enormous difference between not doing CPR when someone's heart stops and actually adminstering, say, morphine to MAKE the heart stop.

The story of the two little girls is horrifying to me because the almost-recipient of the heart is mentioned at all. The little girl isn't dead! The other one has no claim on her body.

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sndrake
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quote:
I have a hard time time processing how I am suppose to tell someone NOT to make that choice if their loved ones are in terrible pain, and if those patients have indicated they are probably ready to move on. Death is a part of life, as hard as it can be.

Not everyone who has a DNR is a quitter, or is doing anything wrong. It's THEIR choice, perhaps one of the most personal choices a person can make. Not every family member who chooses to turn off life support is selfish or wrong. I have seen first hand how torn up most of these family members are after having to make these decisions.

Kwea,

I think you're arguing against a position I haven't taken here. And I don't see how these comments relate to either Terrie Lincoln's story or to the one about Kaylee Wallace.

In both those cases, it was the medical professionals who initiated the discussion to end the patient's life. In Terrie's case, the professionals persisted in the face of fierce resistance on the part of both Terrie and her family.

If we believe Terrie's story - and I do - the question has to be asked: How many spinal cord injured people in those two hospitals had families who acquiesced to the pressure? How many people like Terrie didn't get a chance to survive?

I don't know the answer to those questions and probably never will, but they deserve to be asked.

Edit to add: Most of the argument to end Terrie's life through vent removal was based on the assumption that she *would* recover rather than that she was dying. It's important to remember that, I think.

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Belle
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What kat said above. DNR is NOT euthanasia. I support the first, and not the second.

quote:
I have seen first hand how torn up most of these family members are after having to make these decisions.
I have too. I have BEEN a family member, albeit a powerless one - I was not next of kin and could only watch. With all due respect, anyone who makes that decision should be torn up and upset becaue it's a decision about life and death - we should never presume that it can be made lightly.
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Kwea
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I wasn't arguing with you at all, just responding to some considerations that were raised earlier by other posters, and some of my own musings.
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Kwea
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quote:
Originally posted by katharina:
DNRs and euthanasia are very separate things, I think. There is an enormous difference between not doing CPR when someone's heart stops and actually adminstering, say, morphine to MAKE the heart stop.

The story of the two little girls is horrifying to me because the almost-recipient of the heart is mentioned at all. The little girl isn't dead! The other one has no claim on her body.

I agree, they are, but not everyone realizes that. Also, some of the reasons people choose to make DNR's are related to quality of life issues that also come in to play in other conditions.

Yeah, that story is horrifying, but it happens. Organs have a short life after death, so as horrible as it seems sometimes those decisions ARE made as the person is till in the dying process. Any later and it can't happen.


Belle, I agree. I don't ever want those decisions to be easy, not really. I had a patient who had to let her husband of 69 years go, and she SHOULD have been upset. At the same time, she was also happy that he wasn't in such pain anymore, and at over 90 years old they have lived a great life together.

But I have had discussions with people who argued she "gave up" on her husband, and that she would have been (according to them, as if anyone cared) partially responsible for his death.

Those people piss me off more than just about anyone else.

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solo
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quote:
Originally posted by The Pixiest:
http://network.nationalpost.com/np/blogs/toronto/archive/2009/06/08/baby-kaylee-back-home-her-father-says.aspx

As of June 8th, Kaylee was back home after another trip to the hospital. Lillian O'Connor was still in intensive care on the transplant list.

Just to update this point: Lillian got a transplant
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