BS: would you want to know

Subject: would you want to know
From: Charcloth
Date: 31 May 02 - 11:46 PM

Ok this isn't a musical type question but...
Recently a friend of mine has been in the hospital for cancer (this is his third time)anyway they say he is too badly eaten up with it & offer no hope. His family has decided not to tell him how bad it is & he thinks he has a solid chance. I will respect their wishes but... I can't help but wonder, if it was me I would want to know. What do you think?

I recently played at his sister's funeral & suspect I'll be doing the same at his. Losing a friend is always hard but I will always wonder if he would have preferred to know
Thanks for bearing with me here.
Charcloth

Subject: RE: BS: would you want to know
From: Steve in Idaho
Date: 31 May 02 - 11:51 PM

Ask him - that's what I would prefer. Like Arlo Guthrie said - he did not want to know if he had the gene that made his dad go wacky. I think I personally would want to know. It would not set well with me to have worked my last six months when I could have goofed off with my sweetie.

Steve

Subject: RE: BS: would you want to know
From: katlaughing
Date: 31 May 02 - 11:55 PM

I would want to know so that I'd be sure to have the time to tell everyone how much I love them and try to get my affairs in some kind of order. Deep down I think most people know, regardles of what their families think they are shielding them from...there is an intuitive sense that clues them in, plus they can intuit it from the way their families act.

Good for you for caring so much. Sorry for your having to go through this.

kat

Subject: RE: BS: would you want to know
From: Big Mick
Date: 01 Jun 02 - 12:19 AM

I ache for you on this one, Char. It seems as though the family is being unfair. If they decided not to tell him then it seems to me that they shouldn't have told those that care about him. It puts an unfair burden on you. But you surely must respect their wishes as you have said you would. I think this is a good one to ponder on as I head up to the hill with the old Low D. Know that I will be playing to honor the type of friend that you obviously are.

As to what would I want. That is easy. I would want to know. I made peace with the old masked man a long time ago. Death is not a surprise, nor is the result unknown. But I would want to know so that my last hours on this side of the curtain could be spent reassuring my loved ones and friends.

All the best,

Mick

Subject: RE: BS: would you want to know
From: GUEST
Date: 01 Jun 02 - 12:20 AM

He knows...

Subject: RE: BS: would you want to know
From: Morticia
Date: 01 Jun 02 - 07:42 AM

Having worked with the terminally ill for some considerable time, this scenario really pisses me off. The doctors assumption that your friend has suddenly lost the power of reason by telling his family before him is contemptible and cowardly ( and make no mistake, doctors put this intolerable burden on the family because they don't want the job themselves!).

As one or two people have already said, there is a good chance he already knows however he is almost certain to 'collude' with the family in the fiction to spare their feelings.What will then happen is the family won't get the chance to say what they might have said had the fiction not been in place and the patient won't feel he has permission to do so either.Everybody loses.

I am so sorry this is happening to you and your friend Charcloth,I can't tell you how many times I've seen it and had to stand by to watch people make a not so good ending because of it.

Subject: RE: BS: would you want to know
From: Mary in Kentucky
Date: 01 Jun 02 - 07:58 AM

I agree with Morticia. This is unconscionable. The sense of betrayal at being lied to cannot be overcome. And yes, he knows.

Subject: RE: BS: would you want to know
From: Banjer
Date: 01 Jun 02 - 08:23 AM

I think I would approach the family and ask them how THEY would want to be treated if they were the ones with the illness. I'm willing to bet the majority would want to be told, for reasons listed above by Morticia. Maybe if you talk to them and present your friends side they may reverse their decision and take the time to say what they would like to say rather than pretending nothing is wrong...It's got to be worth a try for his sake.

If they still insist on the deception your conscience will at least be clear knowing that you tried on his behalf.

Like has already been said, I think he knows instinctively...

Subject: RE: BS: would you want to know
From: kendall
Date: 01 Jun 02 - 09:16 AM

He has a right to know. That is, IF he wants to know. Someone should step up to the plate.

Subject: RE: BS: would you want to know
From: RichM
Date: 01 Jun 02 - 09:29 AM

My opinion: (and it's just that, my opinion)

Let the family handle it. They know him best. If he really wanted to know, he would already have taken steps to find out. Do I know what I'm talking about? Yes, from both sides of the situation.

Subject: RE: BS: would you want to know
From: mack/misophist
Date: 01 Jun 02 - 09:31 AM

There are things I must do before I die. I would hate the people who prevented me.

Subject: RE: BS: would you want to know
From: Charcloth
Date: 01 Jun 02 - 09:33 AM

You all pretty much are thinking the way I am but...I have to remember this (this is literaly a text book case)

A Lady was badly eatin up with Cancer. The DR told the family but not her. She was told she was fighting a bad infection. So the lady purposed in her mind to get better & get over the illness. She did. Later everything was revealed to her & she said "Had I known diferently from what I was told, I would have given up. But because I was told I would get better I decided to conquore my fears & get well"

So I can see some positive reasons... which is one reason I will respect the family's wishes. But for me, I think I would want to know
Charcloth

Subject: RE: BS: would you want to know
From: katlaughing
Date: 01 Jun 02 - 10:28 AM

Excellent point, Charcloth. Is your friend the type of person with that kind of mind, to believe and have that kind of faith? Thanks, again, for sharing this with us.

Subject: RE: BS: would you want to know
From: Amos
Date: 01 Jun 02 - 11:03 AM

There are many cases on record where that sort of decision---belioeving one can and will recover-- results in healing.

The most famous one actually completely reversed a condition of advanced lymphoma, to the point of being completely well; then was told the drug he had been given had been rejected as unworkable and his entire condition came back in a few days; he was then told he was being given an advanced and improved version of the drug; he again reveresed the entire course of the disease and became healthy until he was later told that the drug was discontinued as it was proven ineffective; at which point he again relapsed and died. The case is documented, among other places, in "Healing Words". Dossey, L.

Although I would like to know exactly what the doctors' believed, I would not myself be foolish enough to think it was true, in any personal and irrevocable sense.

If the family believew there is a chance the friend might heal himself if not given the bad news, they of course think they are doing he right thing.

I woud be inclined to go see him and tell him that if he doesn't make it, he meant a lot to me.

A

Subject: RE: BS: would you want to know
From: Bobert
Date: 01 Jun 02 - 11:16 AM

Having gone thru this 5 years ago when my wife died of breast cancer, there is only one correct answer. He must be told. No if's, and's or but's about this one. We are all dieing. It's part of the deal. He needs to be informed so that he can plan his own course for the remaining days. It's his life. Not the family's. If they are too selfish to tell him, you do it. Anyone who knowingly goes along with this is part of a conspiracy to steal from your friend information he NEEDS to live his life.

I'll pray for the Lord to speak loudly in the hearts of his family and friends.

Bobert

Subject: RE: BS: would you want to know
From: Liz the Squeak
Date: 01 Jun 02 - 11:38 AM

It's a personal choice. If he is well enough to understand from his family, then he's well enough to ask the doctors himself.

I don't know what I would do if I were in that situation, but I can well understand the 'lay down and die' attitude, I saw it with my father. Almost his last words were 'it's bad isn't it', and mother's reply was 'yes dear'. He was dead 24 hours later.

LTS

Subject: RE: BS: would you want to know
From: gnu
Date: 01 Jun 02 - 02:35 PM

I thought it was against the code and against the law for a doctor to lie to a patient. Certainly grounds for legal action and I would assume against administrative policy. I have instructed doctors to "lie", ie, not tell the whole truth, to others about me, which is not legally actionable, but I cannot see a doctor lying to a patient on instructions from others. No way.

Subject: RE: BS: would you want to know
From: katlaughing
Date: 01 Jun 02 - 02:45 PM

It doesn't seem right, gnu, but I think the doctor could argue it based on their assessment of the patient's state of mind, i.e. mental capacity, etc.

Subject: RE: BS: would you want to know
From: gnu
Date: 01 Jun 02 - 02:57 PM

I disagree. I don't think the doctor can make a decision based on their assessment... perhaps upon the assessment of a qualified shrink ?

Subject: RE: BS: would you want to know
From: Jeri
Date: 01 Jun 02 - 04:07 PM

It doesn't sound like it's the doctor making the decision, but the family. He might very well know and be playing the same game his family is. If it were me, I might pretend I didn't know - and I wouldn't bring it up - because I wouldn't want to hurt those close to me by making them think about it. If he's in that situation, he'd probably love to have someone who isn't afraid to talk about it - someone who would listen to him and try to understand. Maybe there's some way you can let him know he can talk without letting on you know something he doesn't.

If it were me, I'd want the opportunity to say goodbye to people.

The doctors may be basing the decision on "Above all, do no harm."

Subject: RE: BS: would you want to know
From: Morticia
Date: 01 Jun 02 - 04:36 PM

Chances are the patient didn't ask outright.....they seldom do, which gives the doctor the opportunity to evade the issue.....and you know what?People DON'T ask unless they want to know...and you know something else?People can manage to 'forget' what you told them when it's too much to cope with.The human brain is a wonderful device and will generally only accept what it can deal with... and no more.

Subject: RE: BS: would you want to know
From: GUEST
Date: 01 Jun 02 - 04:53 PM

GUEST had the answer way back there. My wife works with terminally ill persons, and has for 30+ years. Her take: The patient is the first to know. Then they react to how those closest to them are acting. If friends/family/relatives all pretend the news is better than it is, they'll go along with it trying to please those friends/family/relatives.

And the most devistating part of all this? Watching the absolute hurt, agony, regret of those "loved ones" when, in the last breath the person says, "You can quit pretending now; I knew all along."

Subject: RE: BS: would you want to know
From: Morticia
Date: 01 Jun 02 - 06:40 PM

Thank you Guest, that sums up succinctly exactly what I have been trying to say...and yes, I do feel passionate about this issue and no, I feel no apology for it.

Subject: RE: BS: would you want to know
From: Amos
Date: 02 Jun 02 - 05:02 PM

Personally, I would not choose to have my loved ones play a game of false realities with me, nor would they choose to do so, but that's the way we have evolved our lives together. While I can't see what they get out of it, I am sure other families play different games.

ANd I think Morticia and Guest are right in the observation that one does know.

The business of compartmenting information is a piss-poor business, IMHO. Life is a lot easier in an open environment, for those who can deal with reality.

A

Subject: RE: BS: would you want to know
From: Liz the Squeak
Date: 02 Jun 02 - 07:37 PM

So what do you do about those who can't deal with reality - and there are a hell of a lot of so-called 'normal' people out there who can't.....

Someone who can't deal with the reality of owning up to their own mistakes, how would they take being told they have a finite time left on this planet?

LTS

Subject: RE: BS: would you want to know
From: Rustic Rebel
Date: 02 Jun 02 - 10:13 PM

I would want to know what the test results were, but I won't let any Dr. predict my death. Any Dr. that would tell me I have so much time to live, I would have to tell them to shove it up their ass.
I would also appriciate the opportunity to do so, which the family of your friend is not allowing.
I also would like the choice,if I thought I was going to die, to die anywhere but a hospital bed.

Subject: RE: BS: would you want to know
From: Charcloth
Date: 02 Jun 02 - 10:25 PM

One thing pertinent to my friends case is his brain cancerous so he isn't his normal self at times. I suspect this is partly why they haven't told him. They took him to live with his son in Fla. so I probably won't get the oportunity to see him again this side of Jordan. So I can only keep him in my prayers.
I think I would still want to know Charcloth

Subject: RE: BS: would you want to know
From: Celtic Soul
Date: 02 Jun 02 - 10:49 PM

Morticia pens: "Having worked with the terminally ill for some considerable time, this scenario really pisses me off. The doctors assumption that your friend has suddenly lost the power of reason by telling his family before him is contemptible and cowardly ( and make no mistake, doctors put this intolerable burden on the family because they don't want the job themselves!)."

I have wondered myself at why it is they seem incapable of simply stating the truth. They state their opinions (read: diagnoses) as fact all the time, regardless of how far off the mark they may be.

If I were the family, I would tell the person, and then I would tell them that the Doctors would not fess up themselves. And perhaps I would suggest we all go down and give the Doc a piece of our mind. Then, maybe this practice will be given a second thought the next time it occurs, at least by that one practitioner.

Subject: RE: BS: would you want to know
From: Charcloth
Date: 03 Jun 02 - 12:22 AM

I don't believe it is the Dr's doing this time I think he is complying with the wishes of the family.

But I don't doubt that often the case is as was mentioned above, sometimes I think the DR's won't tell people the truth cause they lack back bone. Other times it's because they feel they can get more money & then other ocasions they Really care & believe it's best for the patient. I won't try to second guess this case with my friend but I feel they chose this route because they care. Right or wrong decision, it's because of the love they have for him & for that reason I have purposed to respect their wishes... even though I would want to know the truth

Subject: RE: BS: would you want to know
From: SharonA
Date: 03 Jun 02 - 12:22 PM

I would want to know the doctors' prognosis, too. Even if my reaction was to give up fighting and let the end come, it would be my reaction – my decision on whatever conscious or unconscious level – and I have a right to react that way about my own life and my own illness. More than likely, though, I would be among those who would not take the doctors' word as gospel. After all, when I first presented the symptoms of lupus twenty-some years ago, some of the literature out there at the time said that the prognosis for lupus patients was death in 5 years!

Charcloth, you mentioned on June 1st the case of the lady who was told she had a bad infection when she really had cancer, and had decided to conquer her fears and get well. This may be so, but there are also countless instances of cancer patients who decided to get well in spite of the dire predictions of doctors and who went into remission. I guess it all depends on the individual and the individual's will to live and to fight. It's a tough call, especially in this case where the disease affects the brain and its reaction from day to day if the truth were known to the patient.

But if I'm ever in the position where my family and friends and doctors say there's hope, but I think I read in their faces or in my own body-signals that there might not be, I'd like to think that I'd prepare for the end – just in case – by letting my loved ones know in no uncertain terms just what they mean to me and by at least saying, "If I don't see you again, good-bye".

I suppose that the best solution is to live so that one is always prepared to go, in the sense that one tells his loved ones how he feels about them, clears up any quarrels quickly, and so forth... since, of course, any of us could go at any time as a victim of an accident or heart failure or a crime. But I have to agree with Steve (Norton1): I'd be pissed if I went to work any longer than I had to! I sure would hate to die with vacation days left over that I could've taken if only someone had told me that I'd better take 'em!!!

Subject: RE: BS: would you want to know
From: katlaughing
Date: 03 Jun 02 - 01:06 PM

But, Sharon, if we lived as though we could go anytime, as we ought to, there shouldn't be any vacation days left, as we'd be wise enough to have used them up to enjoy life.*bg*

Mortee, I agree with you...in the years I worked with terminally ill patients I cannot think of a one who didn't know, regardless of what they'd been told.

kat

Subject: RE: BS: would you want to know
From: annamill
Date: 03 Jun 02 - 01:34 PM

I've though about this a lot lately. Not because I've been diagnosed with a fatal desease or anything, but because I'm old. Not as old as some, but old just the same.

I would want just the opposite. I would insist the doctor tell me and leave it up to ME to tell my family, ...or not...

A question. Is it possible that the family are cowards and are just taking an easy road? Is it themselves they are considering rather than your friend? (ok, two questions) You would know them better than me I think. These were retorical questions asked to make a point you might want to consider.

I know that I would want to know. I'm working very hard so I can stop working and rest and play. If I knew, I'd stop working right now, go to California and rest and play...and go fishing.

Love to you Charcloth, Annamill

Subject: RE: BS: would you want to know
From: SharonA
Date: 03 Jun 02 - 01:55 PM

kat: Oh, yeah, I didn't think of that... *G*

Subject: RE: BS: would you want to know
From: GUEST
Date: 03 Jun 02 - 11:52 PM

The family has weak genes therefore they will all die young so having buried so many before they are all used to it so it anit no problum to them so why make it problum to you and the rest of us that dont know them no how?

Subject: RE: BS: would you want to know
From: Mudlark
Date: 04 Jun 02 - 12:10 AM

Death of a loved one is heartbreaking, the loss devastating, but it is part of the reality of life. How awful to have to waste precious time in the last months/weeks of life pretending what IS, isn't...for all involved.

Subject: RE: BS: would you want to know
From: Jim Dixon
Date: 04 Jun 02 - 02:30 AM

The patient is the ONLY person who has the ABSOLUTE RIGHT to know what his own condition is. Doctors and nurses have no business telling the family ANYTHING about the patient's condition unless they have first discussed it with the patient and gotten his permission to tell the family. (That's assuming, of course, that the patient is legally an adult and has not been declared incompetent to make decisions for himself.)

If the family THINKS the doctors haven't told the patient anything, they may be wrong. If the patient is acting AS IF he doesn't know anything, that may be his choice.

Some people don't like to show strong emotion (e.g. grief, fear, or anger), and don't like to see others showing strong emotion, either. Other people—sometimes in the same family—think it's important to put every emotion on display. I don't see any grounds for saying that either point of view is morally superior. I do think it's unrealistic, and unnecessarily cruel, to try to force people who have behaved one way all their lives to suddenly start doing the opposite when they are facing death—either their own or a loved one's.

You don't HAVE to discuss the facts of the case (i.e. the cancer or the approaching death) in order to express whatever emotions you're feeling. There are perfectly effective physical, non-verbal ways of expressing emotion. If you're sad, you cry. If you're feeling love, you hold his hand, hug him, whatever. A tactful avoidance of discussing the "facts" is NOT an obstacle to your doing what you have to do to take care of yourself.

If you need to make plans, go ahead and make them. If a will needs to be drawn up and signed, for example, this can be approached as a "what if" precaution.

Subject: RE: BS: would you want to know
From: Kim C
Date: 04 Jun 02 - 10:55 AM

I'd want to know.

Subject: RE: BS: would you want to know
From: katlaughing
Date: 04 Jun 02 - 01:59 PM

Jim Dixon makes a good point. Get your affairs in order before something like this happens. Be sure to include whether you want "heroic" measures taken to keep you going. Also, I would suppose, if you put it in writing that you'd want to be kept informed of ALL information, including whether one was terminal or not, that would have to at least be taken into consideration, esp. if one has filed it with their doctor. Anything we can do to clarify, before this kind of thing comes up, can help.

kat

Subject: RE: BS: would you want to know
From: Celtic Soul
Date: 04 Jun 02 - 10:31 PM

Charcloth? Are you serious? Unless the person is under the age of consent, who are his family members to decide whether or not the person in question is told the truth? And who is the Doctor to tell the family without the permission of the person himself?

I cannot fathom usurping a persons rights at any point in their lives, let alone what amounts to their last moments.

Subject: RE: BS: would you want to know
From: Charcloth
Date: 05 Jun 02 - 02:00 AM

He's in his 70's has brain cancer & a social worker has been involved becuase he isn't always quite there. The police & social worker were called in because for some reason he had a dead dog in his trailor for several days & the smell was a bit out of the ordinary. He was disorented & a few other things. So the whole scenerio isn't so simple as you'd think. I'm thankful he has folks who care. It could have been even worse

Subject: RE: BS: would you want to know
From: GUEST
Date: 05 Jun 02 - 10:58 PM

NO!