Prognosis Question - Should the patient be there when we ask what the prognosis is?

earthperson2010

Linda3D said:

Wow!
My question started quite a little discussion, didn't it. Thank you so much everyone for taking the time to write what you have and to explain your views so clearly. (Note to bailey1459. I haven't seen an email from you. Would it be sent to the email address associated with my profile or some message system on this website?)

I believe I need to clarify one thing. We're not suggesting keeping information from dad about his cancer or treatment or from being involved in his treatment. On the contrary, we would LOVE if he actually got more involved. (But that's a subject for another thread.) We want him to be an active participant in his treatment and don't want to keep anything about his treatment from him. But a nurse told us the doctors will not discuss his prognosis unless we ask. Mom wants to know but it appears that dad does not want to know. Well...it's not that he doesn't want to know he just keeps...the way he talks it's like he's got some serious illness (more serious than the flu, for instance) but the doctors are going to treat it and he'll be back to normal in a month or so. So for him there's nothing to ask. He has cancer, they are treating it, he'll get well. Maybe we're wrong, maybe he does get it but this is just his way of keeping a positive attitude but we don't think so. Today, for instance he had the infusion port put in. The surgeon was talking to him about potential infection, stuff like that, and used an example of a woman who had her port in for a year. Dad said that wouldn't be a problem because he doesn't think his port will be in very long. Part of the problem, I think, is that dad has a hearing problem and he misses a lot. Mom and I make a point of telling all the doctors and nurses that and we interrupt regularly to ask dad if he understands, if he heard that, etc. And yet when mom and I say things like 'inoperable' and 'stage IV' dad says he hasn't heard anyone say that. But I'm getting off subject. No one is talking about keeping dad out of his treatment because yes, it is HIS cancer. But asking for a prognosis is not part of the treatment. I think if mom asks that dad needs to be there because he sounds like he just doesn't get it and I think he needs to know. Mom, on the other hand, is concerned that he'll just give up and not try if he hears bad news. Her mother was diagnosed with emphysema, took it as a death sentence, went home, put on her bathrobe and waited to die for 20 years. She stopped living. She doesn't want dad to hear a bad prognosis and give up.

We don't have to ask. We don't have to know. We can just do like we're doing now, continue going for treatment and continue fighting for whatever we're fighting for as long as we have, as long as he has. That is an option. But We do need to get dad to take this more seriously because right now he's not eating or drinking like he should ("I drank a couple of glasses of water today. It's not 8 but I made an effort.") Maybe he'll use the hand sanitizer we bought. ("I don't see me using that.") It's like we see all of this as life and death and he's going to just keep doing what he's always done and get well. It's a mess. And, again, I'm all over the place.

You guys are great - all of you. I'm glad I found you. I'll try to stay more on topic in the future and not ramble as much. Thank you again for taking the time to reply.

Linda
Feeling guilty for rambling so fade to black

It is obvious
Linda,

Look, it is obvious that your father does not want to know. Your mother is right to be concerned that he would give up. Why do you want him to know?

"the way he talks it's like he's got some serious illness (more serious than the flu, for instance) but the doctors are going to treat it and he'll be back to normal in a month or so". "Dad said that wouldn't be a problem because he doesn't think his port will be in very long". This is to his great benefit that he thinks this way, why to break his peace of mind?

Why do you really need him to "get it"? How will this help him in his treatment?

You want him to take better care of himself, like eat and drink better. You definitely will not accomplish it by telling him his prognosis. You might tell him that he will do better with his treatments if he takes good care of himself. He will be better pre-disposed for his treatments if he has peace of mind.

My opinion is that you should continue going for treatments and continue fighting for whatever you are fighting for as long as you have, as long as he has and not to give him the information that would emotionally "kill" him like his prognosis for example.

This is my last comment on this subject.

All the best to you and your father and your mother.

earthperson2010

unknown said:

This comment has been removed by the Moderator

All I will tell you is that
All I will tell you is that I am a family member of a cancer survivor.

Linda3D

earthperson2010 said:

It is obvious
Linda,

Look, it is obvious that your father does not want to know. Your mother is right to be concerned that he would give up. Why do you want him to know?

"the way he talks it's like he's got some serious illness (more serious than the flu, for instance) but the doctors are going to treat it and he'll be back to normal in a month or so". "Dad said that wouldn't be a problem because he doesn't think his port will be in very long". This is to his great benefit that he thinks this way, why to break his peace of mind?

Why do you really need him to "get it"? How will this help him in his treatment?

You want him to take better care of himself, like eat and drink better. You definitely will not accomplish it by telling him his prognosis. You might tell him that he will do better with his treatments if he takes good care of himself. He will be better pre-disposed for his treatments if he has peace of mind.

My opinion is that you should continue going for treatments and continue fighting for whatever you are fighting for as long as you have, as long as he has and not to give him the information that would emotionally "kill" him like his prognosis for example.

This is my last comment on this subject.

All the best to you and your father and your mother.

This has gotten twisted so
This has gotten twisted so far in every which direction. One more clarification. My question was simply this: Mom wants to ask the doctor the prognosis but she doesn't want dad there when she asks. By 'prognosis' I don't mean "How long does he have left?" but rather "What is the goal of treatment?" To cure, to extend life (if so, a little bit or a lot) or to make him comfortable with the time he has left. The reason for our wanting to know (and for my wanting him to know) is so HE can best decide his course of treatment. For instance, if he's having HORRIBLE side effects from chemo and the purpose of chemo is to improve his quality of life then he may prefer to forgo the chemo and have better quality of life with what time he has left. That sort of thing. My mother would like a general (VERY general) idea of how much time he has left so she can emotionally prepare. You know, are we talking weeks, months, years. If nothing more than to know if there is some urgency (or not) to get things in order - prepare a living will, etc. Other than that we have no desire to ask how long because we know no one can truly answer that question.

With all that has been said here I believe the best thing to do is to ask dad if he would like to know what the goal of treatment is. If he doesn't want to know then leave it at that. I guess mom can ask if she wants to for her peace of mind. It's up to them. I just need to stop trying to help and take care of them and let them do what they want to do. Either way I feel utterly helpless. Thank you again for everything.

Pghmomma

Linda3D said:

This has gotten twisted so
This has gotten twisted so far in every which direction. One more clarification. My question was simply this: Mom wants to ask the doctor the prognosis but she doesn't want dad there when she asks. By 'prognosis' I don't mean "How long does he have left?" but rather "What is the goal of treatment?" To cure, to extend life (if so, a little bit or a lot) or to make him comfortable with the time he has left. The reason for our wanting to know (and for my wanting him to know) is so HE can best decide his course of treatment. For instance, if he's having HORRIBLE side effects from chemo and the purpose of chemo is to improve his quality of life then he may prefer to forgo the chemo and have better quality of life with what time he has left. That sort of thing. My mother would like a general (VERY general) idea of how much time he has left so she can emotionally prepare. You know, are we talking weeks, months, years. If nothing more than to know if there is some urgency (or not) to get things in order - prepare a living will, etc. Other than that we have no desire to ask how long because we know no one can truly answer that question.

With all that has been said here I believe the best thing to do is to ask dad if he would like to know what the goal of treatment is. If he doesn't want to know then leave it at that. I guess mom can ask if she wants to for her peace of mind. It's up to them. I just need to stop trying to help and take care of them and let them do what they want to do. Either way I feel utterly helpless. Thank you again for everything.

Linda,
I understand where
Linda,
I understand where you are coming from and what you were asking and you still are asking. I think that dad needs to know his plan of care. Weather its lets to chemo then scans and chemo and see how everything is. Or weather its he has a 40% chance of it coming back when the chemo kills it. I think he should know.
Only because then he is very familiar about fighting the cure and what is about to happen.


I know when my dad came out of surgery we all new he would need radition but didnt wanna tell my dad to upset him, we wanted him to focus on getting better. Well now that its done and he is better he is going thur chemo now, my mom asked the DR what was the liking hood of it coming back even with treating with chemo. He answered with my dad in the room. we didnt wanna hide it from him, we wanted him to understand that this MAY come back and if it does we will deal with it it sokay. God has a plan.

Take care and best of luck in what you and your family chooses to do.
Tina