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Author Topic: Having an opinion is a dangerous thing
Dagonee
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The situation (as presented by an observer with a definite pov):

quote:
Driving home from Christmas shopping, I couldn't believe what I heard on NPR. Misty Cargill is a woman with a mild intellectual disability living in a group home in Oklahoma. She and her boyfriend go to movies regularly and play in a weekly bowling league with friends. She works full time at a nearby factory. Her life is normal in almost every respect except one: Misty Cargill needs a kidney transplant.

I'm no expert on the gut-wrenching ethics of transplant decisions, nor am I a doctor. But when I heard that Cargill was told that she was not a candidate for transplant because of her lack of mental competence, I was outraged. The University of Oklahoma Medical Center decision makers claimed that she was unable to give informed consent and turned her away.

They did this despite her own physician saying that she is perfectly competent. The hospital then suggested she get a medical guardian, but state officials refused to play the role, because they rightfully determined that she was already fully competent. Most recently, the hospital has offered to conduct its own assessment of her competence, and that's due next month.

The conclusion (from the same observer):

quote:
I suppose we shouldn't be surprised. In one survey quoted by reporter Joseph Shapiro, 60 percent of transplant centers reported that they'd have serious concerns about giving a kidney to someone with mild to moderate intellectual disability apparently based on fears that these patients can't handle the complex post-transplant care. The facts are exactly the opposite: People with intellectual disabilities who have been lucky enough to get a transplant do as well if not better than non-disabled people, probably because of their fidelity to instructions and their network of caregivers and supporters.

Lurking below the surface is the more likely reason for denial: Someone determines that people with intellectual disabilities are inferior, human beings of lesser value, the last priority. They're put last in line because they're thought not to matter quite as much as other people.

I have no idea if his assessment of the "facts" as related to the care of post-transplant patients with moderate intellectual disability. Even if it's true, there's a fairly large gap between that and his conclusion that the decision is based on valuing her less as a person.

I have no other knowledge of this case than this article. I have no real basis for forming an opinion on the subject. Yet I can't shake the feeling (and it's just a feeling) that his conclusion is correct. If his facts about post-operative care are correct, then the decision is based on a misperception within the hospital somewhere. Whether this misperception relates to how her worth as a human being is perceived, I don't know. But there's a clear disconnect (again, if the post-operative care assessment is true).

I don't have the opinion that his conclusion is correct - I tend to avoid forming them when possible. My opinion is limited to this conclusion: if the facts are as presented in the article, then this patient ought to be on the transplant list.

My problem is that I have no idea how I could actually form an opinion about this. I can form - and have done so - an opinion about the principles that should govern this. But I can't apply those principles to determine an outcome absent a host of assumptions. To verify those assumptions would mean analyzing information that is not only second-hand, but conclusory.

I think I'm smart enough to get educated enough to fully investigate this issue. But I certainly don't have the time to do so, nor the time to do so for the hundreds of other ethical issues such as this one that also require specialized knowledge. I'm left relying on experts, and many experts give us there conclusions without providing the starting premises. There are both scientific and ethical premises to this decision, and the ethical premises need to be clearly separated out and not left to the exclusive domain of science.

I don't know quite where I'm going with this. The article made it clear to me that our means of public discourse are ill-equipped to allowing us - the body politic - to analyze these issues. Yet we must have an understanding of them if we want our increasingly regulatory state to regulate them in accordance with our (in the collective, highly-impossible-to-define sense) ethics.

I am not prepared to leave such policy setting only to the experts in the field, because many of the premises are rightfully the domain of the non-expert. However, we must have the input of those experts as well, and must be able to trust that their input is not bent to support a particular outcome.

And I don't know how to do that or to have it done.

P.S., I loved the following bit from the article. It's not directly related to my larger point, but it does very nicely say something I strongly believe:

quote:
But on Christmas, we might remember that no matter how many restrictions and rules we create, the enigma of humanity remains our inability to follow the mystery of love all the way to its awe-filled conclusion: Every human life matters. There are no exceptions. There is no hierarchy. The presence of the divine can be seen in the tiniest and most vulnerable just as it can be seen in the strong and powerful.

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Eaquae Legit
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Sadly, his conclusion is one I've experienced myself with many of my clients and friends. I don't say that he's right in this specific case, but it wouldn't surprise me, not one bit.

quote:
But on Christmas, we might remember that no matter how many restrictions and rules we create, the enigma of humanity remains our inability to follow the mystery of love all the way to its awe-filled conclusion: Every human life matters. There are no exceptions. There is no hierarchy. The presence of the divine can be seen in the tiniest and most vulnerable just as it can be seen in the strong and powerful.
At a time when work has the ability to stress me into panic attacks, I'm really glad to be reminded of this.

Merry Christmas.

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King of Men
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Are kidney transplants a limited resource? Is there a need to prioritise who gets them, or are they common enough that you just need to apply and wait for a surgical team to be ready? Not that this necessarily changes the ethics (personally I think it does, but I suppose not many here would agree), but I'm curious.
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FlyingCow
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From my understanding, kidney transplants are very difficult to get, and there are loooong lines to get them. My friend's mother waited something like 6-8 years to get her kidney, being on dialysis the entire time. When she did get it, the kidney only lasted about 2 years before failing, putting her back on dialysis.

They don't expect her to get another matching donor, but they're hopeful.

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Bob_Scopatz
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One thing that FC points to is that you don't just get any kidney...you have to wait for one that is a match. What the medical decision makers told this woman (apparently -- I'm with Dag on waiting to form an opinion) is that she can't be put on the list that would make her eligible to receive one...eventually, when a matching donor is found.

Things I would like to know more about:

1) Is there ANY reason to believe that the new kidney would last a shorter time in her body than in another compatible recipient's body? Not just post-op following instructions, but ANYTHING?

2) Is there an expected lifespan issue? I seriously doubt there is, but I know that at least at the extremes, that kind of thing enters into the decision.

3) Does the organ bank have a written policy on the issue of transplants for people with disabilities in general? For mental disabilities in particular?

4) If her kidneys were healthy, would they accept her consent if she potentially wanted to donate one?

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Dagonee
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quote:
Originally posted by Bob_Scopatz:
One thing that FC points to is that you don't just get any kidney...you have to wait for one that is a match. What the medical decision makers told this woman (apparently -- I'm with Dag on waiting to form an opinion) is that she can't be put on the list that would make her eligible to receive one...eventually, when a matching donor is found.

Things I would like to know more about:

1) Is there ANY reason to believe that the new kidney would last a shorter time in her body than in another compatible recipient's body? Not just post-op following instructions, but ANYTHING?

Agreed, with one caveat: I'm not big on using expected outcomes based on probabilities to determine how someone will act. Even if there is a study that shows such disabilities lead to lower compliance with instructions with a measurable drop in survival attributable to lower compliance, I'm against that being used in the decision-making process.

quote:
2) Is there an expected lifespan issue? I seriously doubt there is, but I know that at least at the extremes, that kind of thing enters into the decision.
Agreed. I agree it's unlikely.

quote:
3) Does the organ bank have a written policy on the issue of transplants for people with disabilities in general? For mental disabilities in particular?
This is critical.

quote:
4) If her kidneys were healthy, would they accept her consent if she potentially wanted to donate one?
Good point. 1 and 2 are the kinds of issues that make this difficult for the layperson to understand. We're going to have to rely on expert analysis to answer these questions. And the results will be highly skewable based on small decisions in study design, data interpretation, and discretionary decisions (such as excluding a patient from the analysis). If two experts produce different outcomes on either question, we (lay people) have no real way to determine who is correct. The resolution will rely on another expert.

Zeugman, excellent post. Doctors (as a group, not necessarily any particular individual) have a tendency to undervalue the quality of life of disabled patients compared to those patients' own assessment.

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ClaudiaTherese
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quote:
Originally posted by Dagonee:
The facts are exactly the opposite: People with intellectual disabilities who have been lucky enough to get a transplant do as well if not better than non-disabled people, probably because of their fidelity to instructions and their network of caregivers and supporters.


I know this isn't the focus of Dagonee's question (or a/the crux of his argument), but I'd just like to chime in that this is my understanding of typical outcomes as well.

---

Edited to add:

And while I'm here, I'll note that the trend below is well-established and well-documented in the professional literature, a fact that I have brought up before in sndrake's threads:

quote:
Originally posted by Dagonee:
Doctors (as a group, not necessarily any particular individual) have a tendency to undervalue the quality of life of disabled patients compared to those patients' own assessment.


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Dagonee
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quote:
a fact that I have brought up before in sndrake's threads
The sole reason I feel confident in referring to it so casually and without a link.

Thanks for sharing your understanding on the compliance issue as well.

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ClaudiaTherese
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*delighted nod

I will look to provide a few links, just for your later use if needed. Reading some of the articles in the pediatric literature was an eye-opener for me.

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Elizabeth
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As a person who has worked in group homes for years, off and on, I can say that a person in group home care would be more likely to take care of themsleves than I, a chronic procrastinator who falls asleep before brushing her teeth, becasue she will "do it in a minute," would.

I think there are both types of stereotypes placed on people with disabilities. Some feel that they are unhappy(how could anyone so "stupid" be happy?), some feel that they are "just so happy, isn;t that sweet?"

Neither is true. People with intellectual disabilities experience the exact same continuum of emotions that people without them do."

I find the whole discussion ridiculous. A person is a person in the eyes of a doctor, or should be, as far as I am concerned.

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