[handpuppets]

Air:

Using your cancer analogy, if I choose --already knowing that the odds are low-- to continue my chosen path of treatment, should the Doc (and his assistants) keep telling me that the odds are not in my favor? Where does patient choice and agency come into play once the odds are shared?

And if many of the patients --who are part of the cancer center patient community-- say "hey... that's not so helpful when you tell me what the odds are" [because we already know the odds suck for this horse race] .. why would you disparage their voices/feedback to improve patience care? 

[Slow Fade]

 I have to disagree Airmid. When my Brother was diagnosed with cancer two years ago, we didn't give 2 figs about the "odds". All we cared about was what can we do to try and fix this? What can we do to make sure we are doing all that we can do......support groups were there to encourage us not to give up hope. They let us rant and they let us cry and they let us ask questions and they empathized with us and told us about people who recovered.

 As the disease progressed and treatment after treatment did not produce the desired results, we began to understand all on our own that the "odds" were against us. Did the Doctor tell us up front that our "odds" were not good? No, he told us about treatment, did everything he could do, gave my Brother tools to make his life more comfortable and walked through this awful ordeal with us.

I shudder to think what my Brother's outlook would have been had the Doctor walked in the door and said "Well you have a 95% chance of dying of this." He told us it was serious, but that we were going to do everything in our power to get through it. I much prefer that advice to going right to brutal truth in the midst of a shocking and traumatic diagnosis........

We all know that the odds are stacked against us. I don't think we need to have that message in our face as we are reaching out for support.......that message as opposed to the ones I received when I got here would have certainly changed the choices I made and NOT for the better in my opinion. Just my .02, my perspective, my opinion and my experience.

[nah]

So like cancer MLC does have hard statistics?  or not?

On one hand the mentors say "odds go down with time" and "like pancreatic cancer there is a 5-6% survival rate (similar to divorce and remarriage)" but when we ask about statistics, Oh no there aren't any reliable statistics, focus on yourself, don't think about your odds or chances. 

I'm confused.

[lawprofessor]

Good Afternoon Handpuppets,

Using your cancer analogy, if I choose --already knowing that the odds are low-- to continue my chosen path of treatment, should the Doc (and his assistants) keep telling me that the odds are not in my favor? Where does patient choice and agency come into play once the odds are shared?

If one chooses the path of treatment, the doctor would not keep telling the person the odds are low since it was already discussed once ("already knowing the odds are low"). 

However, in this case, I am not aware that RCR ever came out directly and discussed this. Therefore, one could say the "doctor" did not "keep" telling the patient that as this was the first time. 

And if many of the patients --who are part of the cancer center patient community-- say "hey... that's not so helpful when you tell me what the odds are" [because we already know the odds suck for this horse race] .. why would you disparage their voices/feedback to improve patience care? 

The problem there I would suggest is that not all or even most patients may feel that way.  The doctor has an ethical duty and legal duty to provide all information necessary to make informed decisions.  Since party x does not want to know, does that mean I should also not be told because it may offend party x? 

I guess it has been a pretty even split on the responses to the blog post with some preferring to discuss/read this and others preferring not to.  Should one side decide for all? Or is personal choice not also involved.  If I'm not interested in a topic, I don't read it, particularly if it has no bearing on my decision.

Lp

 

[terrified_in_TN]

I have to AGREE with Airmid.

I don't think that brow beating members with the odds does any good and I agree that would hurt the overall message of the 'standing' forum, BUT I dont think any of us are asking to do that at all.

Just repearing what I said many pages back-although the articles make it clear there are no guarantees, they way the read (to me) suggests a high degree of likelihood the MLCer would eventually come out of it. I know I slso read that MLC takes TIME, a LOT of time. But it seems the longer it goes on, the less likely r will happen.

Maybe it was the way tge articles were written; maybe it was the way *I* interpreted them, but I would much rather have known up front what I was dealing with.   Someone above said we all know the odds were low, so no use repeating it. I disagree-I didn't know that at all. I was just told there were no reliable statistics. I would have appreciated a more blunt approach. Oh it would have hurt reading it, but I would have appreciated knowing it up front.

-T

[xyzcf]

On one hand the mentors say "odds go down with time" and "like pancreatic cancer there is a 5-6% survival rate (similar to divorce and remarriage)" but when we ask about statistics, Oh no there aren't any reliable statistics, focus on yourself, don't think about your odds or chances. 

I am one of the mentors who would NOT agree with the above, there are others who don't either.

I don't know where this divorce and remarriage rate of 5-6% comes from. As we know, statistics can be slanted in many different ways, and there is no real "scientific measurement"being used  to substantiate this type of statistic.

I would caution about throwing out statistics without stating the source of where they came from.

As well, I would not clump marriages whose partner are having a MLC in the same category of other marriages that end in divorce.

A lot of what has been said here is the viewpoint of each individual poster...and there is not a consensus by any means.

There are several people who have stated that they found the comments about the "odds being against them" and the "longer the timeframe the less likely will be a reconciliation" as being discouraging to them.  There are also several positive things in RCR's blog and I don't think that the debate is about most of the blog...but those two phrases are the ones that some of us have difficulty as there is no proof to substantiate them.

Other's may not read interpret them in the same way but indeed, several people have stated that they do find these two points discouraging.

[Slow Fade]

The problem there I would suggest is that not all or even most patients may feel that way.

But you have no way of ascertaining that unless the patient asks. If you just tell them up front, they are being deprived of the choice to know or not to know. Rather than just coming out and hitting them over the head with the dismal "odds", why can't they be focused on treatment and help. If the discussion about "odds" comes up, then address it.

 

If I'm not interested in a topic, I don't read it, particularly if it has no bearing on my decision.

The problem with this is that a lot of crushed and emotionally fragile people land on this site not knowing what their decisions are going to be. They are looking for help and comfort. They are looking for assurance that they are not crazy! They are looking for a laugh now and then. They are looking for information and direction. It most definitely has a bearing on their future decisions.

[terrified_in_TN]

Xyzf-forgive me-im typing on a phone right now, but RCR posted those two statements in her latest blog, and it dounds as if you are completely dismissing them as unsubstantiated opinion...we all know there are no EXACT statistics on something that can't really be qualified anyway, but I would trust RCR's best estimates based on how long she has been at ghis and the research she has done. While she doesn't cit exact figures (how could she possibly) , I do believe her two statements are true based on her observations.

[terrified_in_TN]

I just wanted to add, and I hate saying it this way as it sounds as if I am criticizing, and I do not mean to be: I think RCR has fone one HELL of a job here with everything she has done from the website to the fourms, the articles, everything...

BUT...without the revalation of those two added statements, I findcthe articles a little bit misleading. Maybe its just where I am in all this, but its just how I feel.

-T

[Reallytrying]

So like cancer MLC does have hard statistics?  or not?

On one hand the mentors say "odds go down with time" and "like pancreatic cancer there is a 5-6% survival rate (similar to divorce and remarriage)" but when we ask about statistics, Oh no there aren't any reliable statistics, focus on yourself, don't think about your odds or chances. 

I'm confused.

I have to agree with this. The analogy is a difficult one for me because there are no statistics for mlc. Where did that 5-6% number come from?