Looking for thoughts on receiving diagnosis

[kimblanchard]

First, I want to thank everyone for welcoming me to your community. I felt a little awkward invading your space at first but you have all made me feel right at home.

If you don't mind, I'd like to get your thoughts as patients/loved ones on how your first oncology visit went. This is something that I feel that I sometimes struggle with. I believe that the initial evaluation will in many ways set the tone for my relationship with the patient and the family for the long haul and so it is crucial that I establish rapport and trust. But I always feel like I'm walking a fine line between giving hope and being truthful.

Case in point. I met with a 67 year old gentleman and his family (all 10 of them) for an initial consult yesterday. He was just diagnosed with adenoca of the left lung with mediastinal nodal involvement. In addition, on bronchoscopy the tumor extends to the trachea so technically he is Stage 3B. We discussed his diagnosis, reviewed the tests that we needed to get and I explained that surgery would unfortunately not benefit him. I did emphasize however that this was still treatable and that it can be successfully treated.

Now early in my career I would at this point go into statistics, 2 and 5 year survival rates, etc. I no longer do that unless the patient specifically asks for statistics. As you probably know, the prospects of "cure" are not in his favor. I think some people are needlessly crushed when they hear some statistics and I don't know that everyone necessarily wants that info.

The patient was I think fairly overwhelmed but just eager to get things going. 2 daughters approached me privately after the meeting and asked me for the numbers and I gave them the ballpark statistics. They were fairly crushed.

Was I right in giving this information to the family without the patient being present? Should I have told them I can't really talk to them without their dad being present (that is the response the hospital lawyer would want me to give )? Am I not being "up front" enough?

[Bill]

oncodoc

If you don't mind, I'd like to get your thoughts as patients/loved ones on how your first oncology visit went. This is something that I feel that I sometimes struggle with. I believe that the initial evaluation will in many ways set the tone for my relationship with the patient and the family for the long haul and so it is crucial that I establish rapport and trust. But I always feel like I'm walking a fine line between giving hope and being truthful.

/////////////////

My first conversation with my wife's medical oncologist was an 11 p.m. phone call. He had just left my wife's room at the hospital and he phoned me from the nurses' station. He told me that my wife had 8 to 10 weeks to live. This prognosis was obviously statistical since she hadn't even had spine surgery, radiation or chemo yet. I recognized this but it was still upsetting to be told this. IMO if he is going to deliver such grim news he should make an extra effort to frame it within the context of treatment plans, etc. BTW, it's also not very encouraging to be told that you have 8 to 10 weeks to live AND chemo won't be starting for 8 weeks !

[stand4hope]

Dr. Joe,

I think this is a good topic. My husband doesn't want to know anything except how to "kill it". To this day (1 year plus), he still doesn't know his stage or that his disease can't be cured (short of a miracle or a new drug). He never asked, but I have, of course, researched and talked to the onc privately and know that he has already far exceeded their expectations. This makes it very awkward for me and my relationship with my husband about this disease. When he began to have shoulder pain and back pain, my mere suggestion that he should get it checked because the cancer can cause that sent him into a near rage. When he had his PET scan and CT that showed cancer was in his bones, liver and pericardium, he was shocked beyond your imagination.

At a bare minimum, I think an oncologist should say something like this on the first visit: "Mr. Smith, there is currently not a cure for this disease, but there are treatments that are very promising for longer term survival. The statistics for this disease are grim, however, the statistics are based on drugs that were used at least 5 years ago, and the drugs today are much more effective, and can keep this disease under control for a very long time." Then, I would wait and see if questions come. I think a patient should be told right up front that currently there is not a cure, but there is good treatment. I DO NOT think they should be told how long they have because I KNOW the doctors don't know. I don't care that my husband doesn't know his stage or his prognosis, but I do care that he thinks the chemo, radiation and now Iressa are going to cure him. The onc has never told him that, but I know that's what he thinks. To him, a 10% response rate, which is what the onc told him the Iressa stats said, means that if he is in the 10% that his disease can be cured.

Did you read the recent thread on this topic? I'll go back and find it and post the link for you just in case you missed it, and I'll just add it to this post.

Here's the link: http://www.lchelp.com/community/viewtopic.php?t=10916

I hope that helps. You are wonderful!!!!!!!!

God bless you,

Peggy

[ellakc2]

Dr. Joe,

It's so hard. Personally I wanted all the truth. The first thing my surgeon said to me which got my attention, was, this is not a death sentence. And then I listened. Your in such shock. I'm so glad I had

someone w/ me to remember everything that was said. If I had to do it

over again I would bring a tape recorder. My dad passed five yrs ago from Pancreatic cancer so Iam no stranger to cancer, but this was a totally different type. But it was the same surgeon so I felt very comfortable w/ him. He was so calm and reassuring. And the hospital

I attended did have a team in place. Good luck and take time w/ your

boy they're only small once.

[stand4hope]

P.S. The reason I think they should be told about the "cure" is because it is factual, whereas prognosis/amount of time left to live, is only a guess. And, of course, my comments would only apply to the ones who cannot be cured - I realize there are some, especially early stage, that can be cured forever.

Thanks again,

Peggy

[TAnn]

Joe,

My first oncology visit was with a private practice oncologist. Of course I was still reeling from the fact that I had lung cancer and really didn't know ANYTHING about it at this point. He asked me a ton of questions about my history, had a hard time believing that I had lung cancer and was a never smoker, and said that there was "not much" he could do for me due to the malignant pleural effusion. I at that time did not know what stage I was, and asked "aren't you going to do surgery?" His response was just sort of a mumbled "no, no surgery". He did not go into statistics and we did not ask, instead asked for a referral to MD Anderson which he was kind enough to give us.

The experience at MD Anderson was COMPLETELY different. My new onc. gave us our options, answered all of our questions, (by that time my husband had done a ton of research on the net), said there was ALWAYS hope, explained the staging, but still did not talk about statistics. I don't think my husband wanted to know, but I did, so I asked. He made sure to explain HOW the statistics were arrived at and that I was young and the statistics were old and not to put "alot" into them. It was still a shock, but the way he explained it lessened the impact.

That was my experience, hope it helps. I personally think you were right to tell the family if they asked. Cancer affects the whole family, and it helps if everyone is educated. (this coming from the patient )

TAnn

[J.C.]

Hello Dr. oncolo,

The oncologist for my husband, was top, even when he

had to tell him that an operation was impossible.

My husband asked for stats. and the answer was maximum

6 months (reluctantly) as he pointed out there are people

that reacted better than others.

I just told him we would make a liar of him, we did, my

husband lived very well for 18 months with only the last

6 days in bed.

When I needed an oncologist, I had to take a lawyer to

get an apointment as I was told I was too old for treatments

(71 years old) I hated him, still do, but I proved him all wrong

as I am still doing extremely well and I am now 76 years old.

I had the pleasure of telling him what I thought in 1999 and

also this year, when I was finally cleared.

First impression was important for my husband and we were

glad that he did not get the same oncologist that I did, for him

it made the difference between accepting or giving up.

I live in Quebec, Canada, that may make a difference.

J.C.

[patut]

I realize now that the best words my hubbie's onc said to us when I tried to ask her what was going to happen were: "We wait and see…we wait and see". She made me realize that none of us really know what is going to happen with all the new meds coming out, etc.

Thank you for coming aboard and learning along with us as well as sharing what you already know.

Cyndy H.

[Don Wood]

Joe, I agree that you not tell the patient or family about statistics unless they ask. After all, it is a numbers game and each person is different. If you give statistics when asked, I would preface it with the fact it is just a statistic, an indication of what the "norm" is, but emphasize as you did that it is treatable, and hold out hope.

My wife's onc did not mention prognosis until we asked. Then he told us and we moved on from there. We were impressed with him from the start, because he told us that his first priority was to ease her pain. Then the second was to treat the cancer. He did both with expediency, and has been very supportive ever since.

We were also impressed that he encouraged us to take a trip to Scotland in May, which he knew we were looking forward to, knowing that something had shown up on a PET in December. When we got back from the trip, then he shared his thoughts and asked for another PET. By comparison, there were three new places, and he began chemo. We were grateful that he did not spoil our trip, since it was not urgent to treat and she was feeling very good at the time.

We asked for the prognosis initially because we wanted to get it behind us and move on (besides I would have learned it on the Internet). But I know there are cases where the persons do not want to know, so I would not volunteer it.

Please continue to do the excellent caregiving you are doing with your patients. They are fortunate to have you on their team. And my wife and I are fortunate to have the onc we have. Blessings. Don

[Elaine]

Well. you have asked the million dollar question. I think in the specific situation that you describe that you might want to ask the daughters what they think you should do about telling the wife and/or the survivor, explaining the possible consequences of not telling them as well as the benefits. They are apt to know their parents better than anyone--. Ask who they think the information would best come from--a family member or you.

Generally speaking, I dont think you should give statistics, unless asked to do so, but you know that even when someone asks, their response is apt to be one of visibly being crushed. Also, I wonder if Drs know that some people may not show how crushed they are and thus don't offer emotional or medication help for the anxiety.

However, at stage IV I DO believe you should tell the patient that the disease, with what there is to offer as far as treatment, is NOT curable. After which, I would just wait for questions as statisical data on "time left"--etc. Stage IIIB--not sure, except to do what you did and talk about treatment and that it sometimes works for some time. Then wait and see if questions are asked.

One thing I would not do is mention smoking as the blame. As a matter of fact, I would actually tell them that it might be or is probable that smoking alone did not cause their cancer. That it might well be a host of variables that collided. My Drs, over and over, to the point I wanted to run out of the various rooms I was in, mentioned smoking as the reason I was in my "predictament." I said nothing, mostly because I was in a state of numbness and self-blame to begin with. The word "predicament" seems a poor choice and putting the pronoun "your" in front of it was even more humiliating. Of course, I doubt they realized they were speaking to a college writing instructor, lol. Semantics!

I really think that because of the stigma with LC that the Drs need to address the blame thing more than with other cancers. I think it should be a part of EVERY initial consult with LC patients. How that is done of course would be up to the Dr to figure out--I just gave a possible way to do it. Remaining silent about smoking to a smoker is not going to be beneficial, in my opinion.

Regardless of what you do or do not say, I think the most important thing is to treat the person as a person and acknowledge their humanity in whatever way you personally have found to be able to do so. I know HMOs and the like may have put added pressure on Drs. time, but spending a few minutes talking to the survivor, would seem to be the human thing to do.

I am glad you are feeling free to ask us questions and I know that you seem like a person who will consider the responses with thoughfulness and with seriousness. Your openess to learning is so refreshing!

I also have been thinking a lot about what a Dr shoud say about chemo. I read a recent survey that said that someting like 80 per cent of oncs say they would refuse chemo if they had certain cancers or DXES.. Sure, in the abstract the number is surely higher than it might be in the reality of DX, but I wonder if oncologists ought not make it clear the purpose of the chemo ie. curative, life extension (if so, how long as opposed to the time lost being sick from it) etc.

Lastly, phrases that needs to be purged, lol, are "the patient failed", or especially, "you failed" this or that treatment. The patient DID NOT fail. The treatment did. Human knowledge failed. Our understanding of the complexities of life and death and times in between have failed us all, and in the case of cancer, the complexities have failed us thus far, but there is always HOPE!

Thanks for joining and for making us feel useful, too!

elaine

P.S. There's another term that seems hopelessly tasteless. I think it's called "salvage" care or something like that. I guess there is the thought that Drs need to be able to somehow not become too emotionally attached?, but salvage and junk yards are too closely associated.

[kimblanchard]

My husband never asked about timelines but he was very overwhelmed. I asked. The lung doctor told us lung cancer, stage 4, but deferred on timeline to the onc. So we are thinking terminal. Then we saw the radialogist. He told us incurable but deferred on the timeline to the onc. So we are thinking terminal.

THEN we saw the onc. She was full of questions and plans, lots of energy, and full of we can try this and this and this. The main thing my husband heard was her enthusiasm. She also got us moving immediately into treatment, and that was helpful. She made it clear it was not curable but that there was much that we could do. She didn't want to talk about time at all but when I short of pushed it, she said quietly a year or year and a half if this works. I said, "If it doesn't work" "A few months." And the way she said it, she really didn't want to say anything at all. And I kind of didn't believe her, either, but I just needed to hear something. Bless her. Later, when he was responding to the treatment she amended that - she said not curable but now the future time was "open-ended." I think that might be kind of optimistic but I allow it, you know?

We love her!!!

I was glad that I asked because I had to have some sort of time frame just to get on with my life at all - I just had to. I am happily adjusting it lengthwise now.

I want to add - I feel an intimacy with that office that I have with no other - I think it is right that you give the info IF it is asked for. I think the situation may merit some stretching from strictly legal definitions. My people tell me anything I ask, so far.

Margaret

[chloesmom]

Dr. Joe,

Thank you for your interest in our group. In terms of talking to the patient as an oncologist, I think that it is up to the oncologist to be the more compassionate member of the treatment team. I know that when I had early stage breast cancer, it was the radiation oncology department in my local hospital that pulled me through. I don't mean they sat and held my hand, but they knew my name, they knew what I did for a living, they knew what I liked in terms of hobbies, etc., and they helped me through the blues with medication and caring. I will forever be grateful to them.

Surgeons, my experience is, are more technical by nature. My chest surgeon certainly didn't make a good impression when he walked in the room and shook my hand when we met for the first time and said, "Well, I have a slightly different interpretation of your CT than you had at your hospital. I think your lymph nodes are boarderline enlarged and if that's the case, you're not a candidate for surgery." WHOA! I was enlightened enough even at that point to know what that meant. Turns out, there was no malignancy in my nodes, I did have successful surgery, chemo, and am doing fine.

My oncologist is pretty businesslike, but caring--always has time, always returns phone calls, no complaints whatsoever about her. I had a consult with an onc from the big teaching hospital where I had my chest surgery and came out of there so very hopeful and just thrilled that the onc I saw could recite my history as well as I and recommended the same chemo treatment that my hometown onc wanted to do. He was a friendly guy, not gushing, but just seemed very genuine to me.

My breast surgeon, though is a whole different guy. He sat with me for probably 45 minutes when he first broke the news that I needed a biopsy while I sobbed in his exam room. He continues to be the guardian angel I see resting on my shoulder all the time.

Guess I got off topic here a bit, but my point is, there are some people on our treatment team who we need to have some compassion and friendliness. Blurting out statistics doesn't really help us much. I don't think false hope should be offered up, but I have never had that statistics conversation with any MD for either of my cancers, and it's ok by me, because no one really knows anyway. I always think--LANCE ARMSTRONG when someone says stage IV.

Just my thoughts,

Cindy

[shineladysue]

Dr. Joe,

My husband's first visit with the oncologist was after he had his pneumonectomy in 2001. At that point we were offered chemo as a follow up treatment to surgery. We refused because it was in trial stages, at that point and time and my husband was in such a weakened conditon . The oncologist couldn't give us any proof that it would prevent recurrence .

Our next meeting was upon diagnosis of his recurring cancer . First , I would like to say that he reassured us that the stats on the patients that did the follow up chemo were not conclusive enough to say whether it made a difference. His oncologist was rather serious and told us that because his cancer had spread from the primary tumor to distant sites , it was not operable. He told us that at this stage we aren't talking about cure, we are talking about pallative treatment. He stopped and waited for our questions. We never asked for a prognosis and he never offered one. By saying it is not curable, we knew and I spoke up and said "then we are talking about prolonging life?". He said "yes". I asked about possible remissions and he said yes there are remissions , but even if there are no signs of the cancer, it is not cured with chemotherapy, it is still there. He explained that my husband would be fighting cancer the rest of his life. My husband said, "I'm going to fight this thing" and he has, and is. We made a point of telling the pulmonologist, we don't want to know about stats.. he said he refused to give them out. He believes in leaving them up to God. He told us a story of a young girl that came to him saying her oncologist gave her only 6 months to live... she begged the pulmonologist to say it wasn't true. He told her , that only God knows the answer and to not give up hope. He says it has been 6 years now and she continues to do well. I know you hear these stories all the time.

Dr. Joe, I know you need statistics, but quite honestly, it seems that cancer is such an individualized disease. There are no two cases alike and so much plays a part in the outcome. How can anyone put a time on it? I think if someone asks, even family, you can offer them statistics , but you have to let them know that there are so many different variables that you can't accurately predict. Whether it is ethical to tell the family, I think you might consider the attitude of the patient toward family involvement. I go to every doctor's visit with my husband. We are battling cancer, not him alone. Cancer affects the family.

I think I got carried away and actually Don and Elaine made excellent points in a much more eloquent way than I have. I would like to add that your presence on this board is so meaningful. I hope that we are able to give back even a fraction of what you are giving to us, by just being there...

God Bless you,

sue

[MJ]

hi dr. joe,

i think peggy explained my point of view quite well. my mom never asked the "how long" question, and her onco never forced the answer upon her either. during the initial consultation, my family and i knew very little about the disease, so we didn't really have any questions to ask. my mom's friend, who is a nurse, did ask the onco directly statistically how long my mom had to live, but i think the onco knew that we as a family weren't ready to hear the statistics because he also responded like cyndy's husband's onco ("wait and see"). he has been really considerate with the time he has put into my mom's case, visiting her several times when she was in the hospital, just to clarify any questions and keep tabs on what meds she was taking. also, he immediately returns phones calls anytime of day, several times in which i know that i disturbed him from taking a nap (by the sound of his voice). i know that he often skips lunch during office hours because he has so many patients he needs to see, but he doesn't usually seemed rushed when we go in for our weekly consults/checkups, even if there are many people that need to see him. i have been to every docs' appointment with my mom, so i've become a familiar face. i'm the one that usually does the research and asks questions about my mom's case, and he takes the time to answer everything. right before my mom was going in for wbr, we discussed having my mom start iressa instead of taxotere because i thought that it would be more convenient (since my mom's radiologist and oncologist are at different hospitals). he agreed with my idea, and had her start on iressa right away. he made sure that my mom's insurance received the request that day so that she could start the following day. also, my mom is on celebrex, but her insurance doesn't cover the cost, so we were paying almost $200/month. when he found out about this, my mom's onco gave us a lot of samples of the meds to help defer the cost.

on the flip side, we met with my mom's pulmonary doc right before her initial onco visit, and that was just horrible. he was rushed, looked at my mom's scans and said that the cancer was there for a long time and that it didn't look good (without us having even asked any questions). although we appreciate honesty, this was the first time we had had to deal with this illness (there is no history of cancer in my family, and my mom has never smoked, exercised everyday, and ate well, so this hit us pretty hard), so that was definitely an unpleasant experience. i think that the doc was just having a bad day or something because later on, when he visited my mom in the hospital, he was a lot more patient and kind. i don't know.

by the way, in college at ucla, i was a communications major and i studied doctor-patient interaction. an interesting thing i found was that a lot of docs believed that their consults with each patient lasted far longer (i believe it was almost twice as long) than they actually did. most of these docs didn't realize how much they rushed each consult. also, i analyzed many doc-pat conversations line by line and saw that many times the patients would explain symptoms they were having in a nonchalant manner because they didn't want to seem like they where being hypochondriacs or they were afraid that they symptoms were serious and could not face the truth (thus they would dismiss the symptoms like they were nothing). i really believe that a forum like this where patients, doctors and caretakers can meet regularly and "speak" to each other can help the relationship between docs-pats improve immensely. i thank you once again for participating and providing your expertise. it makes this whole experience a little more easier to handle.

God bless,

mj

[-Cheryl-]

Dr. Joe,

My team of doctors all conferred, but it was my oncologist who called the shots. Every doctor I have met has felt compelled to give me the statistics. I knew what my odds were already, because I had researched the internet extensively. Probably not a good idea. It was all pretty grim, until I found this web site. I found hope for the first time! I actually met people like Connie B., who with my stage of disease, is still here after 9 years of her diagnosis! I wiped away my tears and put back on the fighting gloves. I read something in a book given to me by my sister, called Chicken Soup for the Surviving Soul:

As I ate breakfeast one morning, I overheard two oncologists conversing. One complained bitterly, "You know, Bob, I just don't understand it. We used the same drugs, the same dossage, the same schedule and the same entry criteria. Yet I got a 22 percent response rate and you got a 74%. That's unheard of for metastatic cancer. "How do you do it?"

His colleague replied, "We are both using Etoposide, Platinum, Oncovin and Hydroxyurea. You call yours EPOH. I tell my patients I'm giving them HOPE. As dismal as the statistics are, I emphasize that we have a chance."

If your doctor belives in the cure, so do you. Plus we are all different and unique. The same treatment works differently in everybody. You can't go by those old statistics tried on older, very sick patients, who basially had a dismal outlook to begin with. I am stronger, with no other health problems. Most importatnly, I have the desire to live! I would rather die trying then to let this disease take me like it did my Dad, Grandpa, and Great Grandma. I have been told attitude doesn't make a difference when you have lung cancer. I don't think you buy that either!

So, in answer to your question, I would tell a patient if they ask. However, offer encouragement by letting them know they are not a statistic, and explain how that average was arrived at. Leave them with hope somehow . If one thinks there are options left, they see a future with themselves in it. Telling a person about survivors helps tremendously. Thanks for caring Joe.

Cheryl

[kimblanchard]

The most important straw that we all reach for and clasp tightly is "HOPE". It is the one thing that must not be taken from the patient. Do not lie but also NEVER take HOPE, however slim, from the patient during those first visits. It is traumatic enough without HOPE. Prognosis wording can be such that HOPE is present, I feel patients will survive longer and maintain a better quality of life if HOPE is maintained. In my case HOPE for cure is not realistic...HOPE for added time is.

jim

[Justakid]

WOW what a mess. I went to my first visit thinking I was Stage 1. The Dr. sat me, my husband and mother down and started to talk about everything. I asked him what stage I was and he told me, I asked what the statistics were and he told me, I asked what the treatment was and he told me. I had to ask all the questions, he wasn't giving any information.

After reviewing the statistics I became hysterical and I looked over at my Dr's face for any light of hope or comfort and there was none. He looked like he was going to cry. I asked what the statistics were based on, what were the age ranges etc.

I said that I was healthy, 37 yrs old, the tumor had been removed, 3 out of 17 lymph nodes had cancer cells (not bad ratios) and that there was no reason for me not to be included in the "Live" statistic. He never said anything positive. I walked out of that office ready to purchase my coffin. My husband was speechless and my mother was ready to beat the tar out of the Dr.

I switched Dr's immediately.

Here in VA we sign a statement outlining who a Dr can talk to in our family or friends, that way it's not an issue. I feel if the patient doesn't want to know then that's how they deal with it. As long as someone involved with him/her knows everything, I think it's fine.

Remember, people can read your eyes, make them sparkle!

Thanks for letting me share!

[cathyjack]

Hi Joe,

First, thanks so much for being here!! When my husband was dx's we were at a teaching hospital, he had had surgery and we were waiting for the results. The surgeon came in first with his np and they told us together. I asked what stage b/c I had been researching and i also work in a dr office so I had seen a few cases of ca and knew how important the staging was. He told us it was stage iv which from what i knew was very bad. I looked at my and husband and told him that it was real bad news . The dr sat on the bedside and put his arm around me and asked if I needed anything like medicine to help me. I thought that was very thoughtful since I wasn't even the patient but he was concerned about both of us. Then he said the chemo and radation specalist would be in a little while to consult with us. Then they started coming in packs! teacher and students. I asked each group what their opinion was on how long. They all said 4 to 6 months. We got absouletly no hope at all from any of the chemo group. When the radiation dr came in he was the only one of all that said there is alwasys hope and that he sees mircales every day and he belived in the man upstairs and it was up to him. I can't tell you how much we appreciated that!! We were not upset wtih the dr's giving us the stats b/c we asked for them but it sure would have been nice if they had followed up with some hope. I do think it is important to tell pt's the truth about this disease, I think it is better for the families to be prepared.

But we are all indivuals, the way one person responds may be different from another. I think you are right not to give stats unless asked but I think you should always follow up with hope. Thanks again for being here and listening.

CAthyW

[Frank Lamb]

Hi Dr Joe,and again welcome and thank you for showing interest in us.I feel that prognosis should be made available if the patient wants to know.I wanted to know my odds so I could prepare mentally to fight.It is very hard to fight an invisible foe.But that is just me,other people may tend to give up if told.I also feel most importantly that negativity in any form should be avoided.Worst case scenario the patient deserves hope,whether it be in the form of life or quality of life that is left.Soooo many health care professionals today are short,blunt,even ignorant.That should never be the case.Thanks again for your input and interest.That is an important foundation to being one of the best of the best.

[Fay A.]

May you be blessed for caring enough to ask these questions.....

I hope that at some point all Oncologists will look at late stage Lung Cancers in the same light as other, serious chronic medical conditions. I know that as the statistics exist right now the prognosis is grim....but I also know that by the time those statistics are published, the data upon which they are based is outdated and may very well not accurately reflect the state of science at this time. So if you must give them statistics....qualify the information.

There is absolutely nothing wrong with offering hope for the future. Tomorrow is the future...later this evening is the future. There is absolutely nothing wrong with saying "I don't know." when answering the question "How long do I have?" Because you don't know. You can make a guess based upon education, experience, etc., but it's still just a guess. (I'm one of those who wanted a time, so I could have a target date to prove them wrong. )

My personal take on talking to the family members Vs. the patient is that it is wrong to discuss things with the family not in the presence of the patient. This is MY life...I have the final say in things. I know that some patients don't want to know what is going on. It's their life, they get to control what is and isn't a part of it. But unless the patient has been declared mentally incompetent, or has signed over consent allowing you to discuss their case-in or out of their presence-with another then it just should not happen. You may not know the families well enough to appreciate the individual and group dynamics. (An example: I have relatives who were staunch supporters of the idea of Euthanasia. They made it clear that they were perfectly comfortable with the idea of ending the lives of others based upon their own ideas on quality of life and not on the desires of the person whose life was a stake......until it turned out that they were the ones who could be euthanized...they are now rabid right to lifers. Funny how that works out.)

Just my twelve cents on the subject....

[Lisa O]

Hi!

First, I really appreciate your willingness to post here and share your wisdom and stories. I am certain that all of your patient's benefit by your compassion.

Having said that I would be mortified if a doctor told my family anything about my prognosis that I didn't know. I feel that I am a competent individual and would like to remain in control of my medical care. For some reason this disease makes people feel like they can take over. I do not mean this as a criticism of you as a doctor but -- as a patient I would still like to direct the flow of information.

[stand4hope]

What Fay and Lisa have had to say is true for Fay and Lisa and many others, however, it is not applicable in every situation. Many patients will not speak up for themselves, will not ask questions, do not want to know and will not pursue problems without the intervention of families. This might be because they are too scared, don't want to know the truth, are ashamed, or shy. They might not be incompetent, but not sharp enough to know or understand everything that is being said, and in MANY cases aren't capable of keeping track of appointments, treatments, medications, etc., or for other reasons.

Joe, I personally think that you need to be very careful what you do talk to families about for legal reasons and in order to protect yourself, particularly in light of the new HIPPA laws, but I also realize that many times it will be a judgment call for you. Fortunately, in our situation, the staff asks the patient on the first visit who they can talk to and it goes right in front of their folder. There have been frequent threads/posts on this board about most patients needing an advocate. I agree that some don't, however, it's a good idea to find out right from the beginning, especially since the patient could become quite ill at a later date. I think that by the very fact that a patient comes to a consultation with 10 family members (or any number) for a consultation with you, that patient considers his or medical condition open to those people.

Peggy

[Elaine]

I hate to chime in here again, but I do want to say that I, too, do not want a Dr telling anyone something he or she does not tell me. Actually, it is a big fear of mine that this will be done. Besides the reasons that Fay and Lisa gave, to me it would put an extraordinary amount of pressure on one of my family members. How could they hold such knowledge and have an honest relationship with me? There has to be trust. And that goes between patient and Dr too.

If I am incapacitated in any way, I have chosen who makes decisions for me etc. and I have to be able to trust that the medical community will honor that. Not for me, but for my children.

Now this is what I want. but I can't say what others want, such as the man you spoke of in your post. I do not know how you figure this out other than to be blunt and ask how that is to be dealt with.

[Ry]

How did our first visit go...well..good question. We had already been given a prognosis by our GP before we saw him (which by the way was way off). It went well, we never asked him for a prognosis and he did not give one. The bizarre thing was the man could not look at my husband. He directed all his questions to me it was like John wasn't there. We switched doctors and we are very happy with the oncologist we have now.

Now I mentioned that our GP gave John a prognosis, it was 4 months. We did not ask he just told us. I think he wanted me to know what I was dealing with more than John. He told me very frankly that he did not want me coming back to him later asking him why he didn't tell me. Now our GP also gave us hope by telling us his father had lung cancer that was cured.

So..look your patients in the eye, direct your questions to them. balance any time line with hope and all should go well.

Rochelle

[Donna G]

Wow, that is a loaded question. We sure have thrown that around here, should we be told statistics, if 160,000 die but 20,000 live which should be emphasized. However I remember when I was in Nursing School, a young kid who asked if he was going to die from this cancer, his parents did not want him to know, but I think he did know. I began to think he did not trust anyone , he new we were "lying" to him. He did die.

For myself, being an RN, going to a clinic for shoulder and chest pain, thinking I needed a muscle relaxer, but being told I lung lung cancer- wow! I knew that Pain is NOT an early sign of lung cancer. I was devasted.

My next appointment was with an internist, who set up appointment with Pulmonary, CT biopsy, Onocology, etc. Finally when I saw Dr Duane and he told me he felt I could be cured it was "hope" that I felt, still a lot of fear but some hope. I had a Pancoast Tumor, larger than a golf ball up under my right clavicle, boy was that hard to biopsy! I know I was not Stage I. Here I am nearly 7 yrs later, celebrating many Christmas Holidays more, many more Birthdays, more Anniversaries etc that I never thought I would see. Keeping NED close by.

My point --Stats only mean a lot in hind site, Honesty is necessary . Hope goes a long way. I think listening is most important , finding out what goals the patient has, as "to live til" or " to be comfortable" " not to be a burden" etc are also very important . You say your group works as a team, the team can help find solutions to these worries.

Donna G