Rule 3 unresolved issues

Your moderators, having reviewed the instant-replay tape and consulted among ourselves, have decided that our previous edit was incorrect for two reasons: First, by removing what the original poster intended as the primary subject of discussion (the application of Rule 3 when you believe a member is making a mistake) too much stress was placed on the secondary issue (the role of wives on the forum) which has worried some members of our ladies auxiliary and was intended as a secondary topic; and Second, A number of members responded to the thread prior to the edit and removing the subject made their response hard to understand. Here is the restored text:


Rule 3 states in part: "Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view."

Like our Constitution, this is subject to interpretation by a Supreme Court (our moderators). Two of the areas of ambiguity are: when must we accept treatment decisions as final, and what do we do when the spouse/OP has different treatment motivations from the patient. I thought I'd raise these unresolved issues for discussion.

I. Finality of Treatment Decisions

This was discussed in a thread from a few years ago. Some members expressed the opinion that protecting the interests of the patient supersedes accepting the decision as final. Many patients with indolent, insignificant prostate cancer post comments like "we saw a urologist for his Gleason 6 cancer and decided to just cut it out next week." We all rush in to point out the flaws in doing so, arguing that there's really no need to rush, take your time, get second opinions, there are good alternative treatments, talk to specialists, etc.

We are reluctant to accept decisions as final when a poster writes in something like, "I've decided to forego all standard interventions, and use only alternative treatments (e.g., baking soda and sugar, "Vitamin B-17", extreme diets). It would be irresponsible to not point out the flaws.

I have often rushed in with research when the poster has apparently not made his decision based on the best and most recent research. No one has ever tried to stop me.

II. The poster/spouse vs the patient

In my support group, wives are not allowed (This is part of a longstanding policy of the Cancer Support Community). This was implemented because men do not speak as freely when their wives are around. They often will try to say the "right" thing to please their wives, do not want to appear weak, and men sometimes have different attitudes from women, especially about sex and intimacy. The husbands often make decisions to please their wives.

There is a kind of decisional regret (called "role regret") that occurs when the patient takes a passive stance and allows others to make key decisions for him.

The wife (usually) wants the husband to be around, whatever the cost. The husband often puts quality of life ahead of quantity of life. This plays out in two common decisions - active surveillance (AS) and the use of adjuvant ADT.

(a) Wives sometimes don't get why their husband would not just want to "get the thing out." Every man on AS has had to explain to wives, family and friends why it is an appropriate decision. At Memorial Sloan Kettering they put together an AS training program for doctors that includes tools aimed at other "stakeholders" in the decision. So how do we deal with wives who have convinced their husbands to get radical treatment when he was clearly a great AS candidate? Is it a Rule 3 violation to say that their treatment decision is premature?

(b) Because women can never understand what a man's libido means to him, a husband and wife may have very different attitudes about adjuvant ADT. The husband may want it only if it is absolutely necessary and there is no other way. His wife may desire every extra bit of additional insurance, and may want him to take ADT for the longest duration possible. So if a wife says they have started ADT with say a 3 month Lupron shot and intends that he gets more shots, in a case where the use of any ADT is of questionable value, are we obliged to support that decision by Rule 3?

There are probably other issues where the husband and wife have divergent interests. Do we support the wife if she is the OP, or do we always take the side of what we see as the patient's best interest? I hope the women members will weigh in on this as well. Consensus is not necessary.

My previous version of Part 1 (as reconstructed from my recollections...

I. Rule 3 states, in part: "Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view." How is this rule interpreted in situations where you think the member's treatment decisions were made based on incorrect (or obsolete) information and represent a mistake that is likely to do the member unnecessary harm? The rule says we should "respect" the decisions, not necessarily agree with them. HealingWell is a support site. We all agree that we are here to support members who come here for help. Does Rule 3 require us to "support" his decisions too, or can we respectfully disagree? (TA: let me know if my synopsis is incorrect or insufficient. --PeterDA)

Post Edited By Moderator (PeterDisAbelard.) : 9/5/2018 7:59:19 PM (GMT-6)

SP-

I received pre-authorization from one of the mods.

It's always been my practice to just share my experience and let guys take the info and use it or not.
I don't have enough knowledge to feel comfortable giving advise. Having said that...I believe that it doesn't take very long to find out those that do. I will listen to guy's like TA that have dedicated tremendous amount of time and obviously know what they are talking about. I also will respect those who have a similar Dx as mine and have gone before me and seem to be having success in that treatment. If you haven't been in my shoes I will take or leave your advise.

I also always take any suggestions and check with my treatment team (that I chose very carefully)


As for the wives it seems that the ones here are only here because their spouse doesn't want to do the research. I don't have a issue with caregivers being here and asking for help.

Fairwind….I agree

I've been happy with the way most of us deal with both points and with the way the mods have been dealing with both. However, there are a few that seem to be a bit too agressive when questioning a treatment decision (won't cite examples).

If I see a situation where someone is going to do harm, I will question it. I try to be supportive of the poster and generally encourage them to research all their options. But when it's clear that the poster has made a decision based on reasonable research/thought, I don't question and just try to be encouraging or silent.

When I read a post that says something like, "Saw the URO, just want it out, surgery next Tuesday." I wonder why someone would post that. If you're sure of your decision, why come to a forum like this and post that? I have read that kind of post to be the unspoken question, "Is this right?" in that case I don't think it's disrespectful to gently question the decision - just the opposite, I think it's what the poster was asking for.

In the case of a spouse/partner/child/friend of a man with PC the question of respect is more difficult. On one hand I don't want to encourage any bad behavior on the part of such a person and on the other we can help that person by honestly answering their questions. It's tricky. Most times the spouse/child just needs reassurance that their man will be fine. I do avoid getting into questions better answered by a marriage counselor.

Just some thoughts.

and I think more people here should write poetry.

Andrew

InTheShop said...
and I think more people here should write poetry.

There once was an expert on cancer
Who wouldn’t give me a straight answer.
No matter I tried
He only replied,
“What are you, a mouse or a man, sir?”

I don't know what that means, but I guess that makes it a really really really good poem.

I would like to ask allen if the same dynamics are afoot in the case of same sex relationships as in opposite sex relationship....Im not trolling...you will just have to take my word on that...if you can't or do not want to discuss that...just don't..."do not turn the worm" and the rest of ya get a mind wash

Logo and F8-

It does make a difference. Male spouses are much more understanding about reticence to dampen libido with ADT, as well as their understanding why ED from treatment vs active surveillance is such a big deal. The moderator allows spouses/significant others into the gay support group if the patient wants him there. The gay group speaks much more about sex.

I think Allen summed things up rather well...

The poster/spouse vs the patient - this part was a little unclear... I think as always, they should be welcomed here. There are too many old farts that wouldn't do a thing without their spouse.

I believe there are enough points of view here that most ins and outs gets covered. Each story that comes through the door is always a bit different and a bit of reading of the tea leaves is prudent. The rules and their enforcement, in my opinion, require a bit of loosey-goosey. I guess more of an art, than a science? I've for the most part learned to steer somewhat clear of any guidance giving at all and just give the generic "welcome aboard" deal.

I guess my take on "I've decided on surgery and would like others experience" as a first post may be a bit different. I assume they have been lurking before posting...gathering information for themselves...and may be saying that because they don't want their threads going where they see others have gone. But then again....I also know there are many people here who's minds have been changed so my assumptions don't many times prove out. Ultimately...it's up to each person to find his own way....and I try and respect that. I know it's up to me to find my own way.

I think you just have to take it as it comes.

I think we do a pretty good job with the treatment decision threads--although I think some members cross a line (that I'll admit is very bright for me, and may well be defined differently by others) between "here's what I did and how it turned out" or "Please make sure you check with more than one doctor and get more than one opinion", and "If you do X or don't do Y you'll be sorry".

That being said, IMO the recent rule 3 cases that have stirred things up are not treatment decision questions, but fall into the other parts of rule 3, which says in total:

"3. No posts that attack, insult, flame, defame, or abuse others. Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view. Flaming will not be tolerated."

The first clause, I think, is the one that deserves more insight and discussion.

As a wife of almost 35 years I believe that all treatment options start and stop with him.

His body, his life, his decision.

In some ways, I think I can answer both of TA's questions. I have to respect my husbands treatment options but I don't have to agree with them. For example I didn't want him to do chemo and freaked out about Zytiga, but he choose what he felt was best for him and it pushed the cancer into submission (fingers crossed!).

I see my role as a researcher. I find posts/articles/studies with opposing views, find the good/bad & ugly, condense them into a email (with links) so when he's ready to do his research and make his treatment decisions, I've lessened the load. I think it helps that I have a very strong drive to be fair, so even if I disagree with a treatment option that he's considering, I still do the research.


This board is one of the best information resources out there (thank you and I'm very sorry we all have to be here) and I'm here to understand this disease, to hear how those of you diagnosed deal with the issues and side effects so I can understand better what my husband is going through.

One of the arguments against translating the liturgy from church Latin to the vernacular was that when the common man saw how vague and contradictory it was they would be driven mad with despair. There's a similar problem with the moderators posting on this thread. But...

My take on Rule 3 where we think a member's medical decisions are mistaken is to be as positive as I can about what he* has decided has decided and suggest alternatives as the potential to do even better. "Why yes, Mr Newbie", I say, "cutting off that foot will certainly deal with the athelete's foot problem but I keep hearing about this new fungicide that has the podiatrists all atwitter...." The reason this makes sense, I think, beyond simply adhering to the rules of the forum, is that diagnosis is painful and frightening and having a decision in hand gives men a guard against the psychic pain. If you threaten that decision -- try to take it away -- they will often snarl and snap like a stray dog when you touch its bone. But if you show the dog a pork chop and back away quietly, or tell the man what good results radiation oncologists are getting with cancers such as his and leave him to become curious in a calmer moment...

As for spouses, specifically wives, posting on the forum along with their men, it doesn't happen that much. We have a fair number of women who post here but, usually, they are our only contact with the couple. Sometimes the men are not computer literate and other times they are unwilling to seek support online. Obviously the support we can offer a man using his wife as an intermediate is different, but prostate cancer is often a couples disease and the support we can offer the man through his wife is better than nothing.

I think the occasional presence of women on our anonymous forum is often valuable for other men. Anonymity lets men open up, even in a mixed group, in ways they never could in a face-to-face session with women present, much less their wives. Since the problems that couples face with the disease are often similar I think the occasional exposure to a female viewpoint does give men some insight into their own issues with their wives. And the women are often surprised to find that their husbands' obsessions are widely, widely shared. "It's not just Bob, who is obsessed with the size of his penis after surgery," they realize, "they're all like that... Huh."

Occasionally it does become obvious that the man and his wife have differences that make it impossible for us to support both of them at the same time. When the wife is our point of contact the best we can usually do is to suggest they seek professional help. In the time I have been on the forum there have been one or two cases where I thought the man was adjusting so badly to his situation that the woman was likely to be in physical danger and I advised her to disengage and let the man sort himself out.

*One of the joys of posting on a prostate cancer forum is that we so seldom need to agonize about pronouns.