Poll: Advaced Directives

[Blossom/Jackie W.]

It will take less than 2 seconds to hit "Yes" or "No" ....no comment is expected, though it would be appreciated.

There's a reason for this poll. I'd like to present the results to the Lung Association. When a person is diagnosed here, quite often they're told ..."You have COPD" and handed a couple of brochures/pamphlets or booklets put out by the Lung Association. In the back of most of them there's a section about the need for making end of life choices/advanced directives etc.

Although I do believe these things should be addressed, I DO NO BELIEVE that it should be presented in any form upon "Initial Diagnosis". Most peopkle are still in shock and something like that can easily throw them into a severe depression.

What do you think? Please take the poll and add your comments.

[cheryl]

Jackie - To be brutally honest, I never thought about a significantly shortened lifespan, until I started to visit the different COPD sites. Maybe that's naive of me. I don't think everything should be heaped on a person's shoulders all in that initial visit, but I'm guessing all the information is contained in the same informational brochure. I wasn't ever given any brochures, nor was it ever hinted at that life might be shorter. I really don't know what to think. Possibly the Doctor's think we should just know this???

[morningstar]

Jackie,

I wasn't given any papers but Tom and I were both told I would not live. That the longest anyone lived with COPD was 2 years. It was a lot to be hit in the face with at one time and had me more than a little afraid. I started online and ended up at C I where I finally started learning some of the facts. That was back in 2004.

[Blossom/Jackie W.]

First....let me say....many of you have "visited" but not voted. Please do.

You don't need to be Canadian and it's a simple yes or no answer. With my COPD Canada website www.copdcanada.ca/ (of which Phil is a contributor and supporter) I work hard at "educating" w/o the "terror" that's sometimes expressed to the newly diagnosed.

I'd like to help change that methodology and you can too. For those of you that haven't experienced this scenario, consider yourself lucky. Either way; you have an opinion on whether it should or shouldn't be included....intentionally (done by the medical community) or otherwise.

I think sometimes it comes down to "who" does the testing and under what type of scenario. For me (2 1/2 years ago) it was in a clinic (simple spirometry was done) by an "asthma" educator. When the test was finsihed she gave me this bunch of boolkets put out by the Lung Association on COPD. This was even before I got the "official" report from my GP. Not that the news and method of delivery was any different from him believe me. I just DON'T believe that the initial diagnosis should be including any End Of Life Choices and I'd like to see a NEW mentality in that regard.

BTW....Cheryl; you were very fortunate indeed. If you have a moment read Larry NZ's (a contributor here) letter about when he was diagnosed ....(he was the last poster on this page) www.copdcanada.ca/a_few_more_letters.htm or any of the 2 pages of letters that are included there to the 'Newly Diagnosed"...

Rose....your's was definitely shorter than the long range that I got of 5 years.

There's basically a TIME and PLACE for everything. Original diagnosis ISNT the time.

[John]

Hi Every one;
I was told nothing ! I learned from C I a lot of good stuff But a number of of people tended to scare me. I was beginning to think that every time I got a cold I was going to have a permanent decline in lung function & I started to get overwhelmed with my demise. I kept reading things like 2 to 4 if you have bronchitis & maybe 10 if you have E & if your not on o2 you will be ! I had to get away from there for awhile. I was getting obsessed with all the neg side. I'm sure glad Phil started this site. Not only does it help me cope with the disease, I very much like the positive attitudes about living that flows though every thread. I'm not dead yet & plan on going out kicking when it's time. I don't think people should be scarred the first time they find out they have copd . Last June You may have thought I was going to die by the end of the mo. & here it is almost a year later with good meds, no smoking & copd management I am in 100% better shape than I was then. What if they had told me I was going to die in a year! You know I might have believed them & would have done just that ! Am I going to die ? Of course I am, but theirs a good chance it won't be today & if it is . so be it! I haven't got time to figure out whether it was the chicken or the egg that came first. I've got a life to live .thanks to all of you May God bless all of you .P. S. I voted no

[cheryl]

Jackie - thank you for the link to the letters. I read them and can say that I'm very lucky to have the GP that I have. He seems to be knowledgeable about the lungs. I researched and read a few more articles. I think it is just sinking in that exercise is a big key factor in this disease. I don't do nearly enough. One of the articles that I read about Jo-Von Tucker:

www.healthyresources.com/copd/courage/capetimes-lord00.html

stated --- “Staying physically fit is the key,” she said. Ironically, what your body most wants you to do, sit back and give in, is the worst thing COPD sufferers can do. With specially designed breathing and physical exercise, the body is better able to resist the disease’s affects."

That is exactly me - I'm tired and it's just easier to sit and do nothing. Well, I think reading all the letters opened up my eyes. Thank you for heading me in the right direction.

[maryaz]

I guess it would be rare but there is 'an exception' to my answer of NO. If you are about to die then good idea if can still do it. I think that is the rarer case.

I went to ER and ultimately spent better part of 2 weeks on a ventilator. Was off and couldn't breath and put me back on. I was out of it most the time. They could bring me in and out of the drugs.

Drs were going to take me off the vent a second time. They explained to my family that if I didn't start breathing on my own this time, what should they do. I had no directives. My family didn't know and they asked that drs ask me.

I always thought that a little strange. I am 'many sheets to the wind' and they ask me what I want. I think I misunderstood what they were sayng but it all worked out because I am here. They never expected me to leave that hospital alive.

Here is a good reason to do the Directives and they are very important. We still have not done ours but I have a little problem that I have to figure out yet. It revolves around when is it that nothing more can be done. They thought I was gone then. I know they were right. By God's Grace and many prayers and love I am here today.

I do think with any disease, not just COPD, might be a good idea to have phamplets about Living Wills/Directives. Not to give right away but be sure it is mentioned after things level off. It is a procrastinating thing. I am guilty. I should do that for us for xmas maybe. I don't think there is an answer to my question. My husband knows. If I am in a veg state and can just lay there, pull the plug. If I might make it, like I did, then try.

Didn't mean to write a book. I probably have lots more I could say.

Anyone interested, here is my story and I do not recommend doing it this way.
inspired.freeservers.com/copd.html

I would like to read that book by Jo-Von Tucker but it is really expensive for a book.

[Blossom/Jackie W.]

Mary; I can't believe they were asking you that when you were so "out of it" In that sort of state it goes w/o saying that a person wouldn't be able to think straight. How absolutely AWFUL for you. Makes me cringe.

I DO BELIEVE in advanced directives; but for as much as I've been involved with COPD on the forums, the site, research, clinical studies etc etc....I've only recently felt comfortable enough in my understanding and knowledge of it to even think about making certain decisions. I think the individual has to "learn" first and live with the disease. And yes talking to your Dr MIGHT help but it still comes down to approaching the subject when you're ready (though some will never)

I believe that sort of thing should be REMOVED from the info pamphets and brochures handed out etc.; perhaps put in a seperate type of brochure, a sort of "more advanced" type. I don't know. I do remember seeing that it in the back of the booklets and thinking....I'm the walking dead; . I don't have much time etc etc. Sort of like Larry NZ saying when he got the bomb dropped on him by his Dr. that "he didn't know if he should buy that new pair of shoes or whether he'd be needing them much longer".

BTW Mary; I have that book you're speaking of. I got it from the library though our local one didn't have it. They brought it in from a library in B.C. I'm still trying to read it though I've not had a LOT of time. Perhaps you could borrow it through yours.

To everyone else; please hit the yes or no button. Nothing to it.

[Kath]

Jackie I wasn't given anything like that when I was first DXed but everytime I've been in the hospital since thats the first thing they give me.

[Blossom/Jackie W.]

Kinda unnerving wouldn't you say Kath?

[bobbioh]

I have to share my 1st plumo appointment,I knew I had COPD bad no idea what it was I have had onset Adult Asthma for 18 yrs so I just figured it was that. Boy was I wrong. She never said much just looked at my test results and ordered O2.Then started telling me I needed a lung transplant,She was in my face about it,Needless to say I fell apart,I was there with my 18 yr old daughter in the car,so basicly by myself. I thought I would be dead in a month if I didnt get the Transplant.But she changed my meds I went to Rehab.She put me on Spriva.At my Plumo apt for SSD my Fv1 went from 23% to 28%. And 7 months later Im still kicking and doing well I might add. I knew nothing till I went to COPD International,Then I knew more then I ever wanted to know.Now I deal with it,as far as advanced directives I will leave that up to my husband he knows what I want and what he needs through it all. And so do my daughters so I rest easy and dont worry about it. My Mother had advanced directives she was beddridden for over 5 yrs before she passed and they still didnt just honor her advanced directives,They made me choose what I wanted to be done. That was cruel and tramadic,And left me feeling like why bother they do what your family wants anyways. Sorry for the novel bobbioh

[maryaz]

This is a tough subject. I have heard stories similar to Colleen's before.

Jackie; When they did pull me out of the drugs to listen, I could understand what they were saying to me but I really didn't understand what it all meant. He could say it to me today and I would still question it. Of course, I couldn't talk about it as I had a vent down my throat. So, I thought I knew and I gave an answer which probably was the wrong one but it all worked out.

My family didn't want to make the decision. My husband, for sure, thought I should tell them. The day I came home from the hospital, the first thing my youngest son wanted to say is that we all share our feelings about that scenario. We all feel about the same. I always linger with 'when do you really pull the plug' or 'when do you really know there is no hope left'.

Thanks for the idea on the book. I always forget the library. I never went too often unless I was doing research.

[cocojax]

I guess I am the odd man out, my doctor had told me I had emphysema and put me on some meds, I never knew how bad I was until I ended up in the hospital, I had never even been tested and yet I found out I only had 30% lung function left. I had never heard of an exacerbation. When I came home from the hospital I had to wait to go to the respirologist. I went on the internet and what I found out horrified me, and I had no one to answer my questions. So I wish someone would have been straight up with me and I could have probably handled it better.

[maryaz]

Coco, hopefully for the future, some of these methods of treatment or awareness will be changing, to the better.

[the bear]

Most definitely not. I would not expect a death scenerio on the first diagnosis, nor would I be prepared for it.
When patients first learn of even having COPD the very first word is enough to depress them "Chronic" having a long lasting, illness. Then to find out it is incurable is enough to shock and send anyone into depression. I quite agree that there has to be a hell of a lot more education given to the educators and doctors about new medications and methods.
The body is made to move. Move it.
They only bury the stopped. Never someone moving. bear.
Definitely no death stuff on first diagnosis I vote no.

[morningstar]

Things need change as we all know. I don't remember a lot about most of my stay in the hospital but I do remember being worke up and ask a lot of question about a living will. If I had one. To sign one , who to put in charge, what did I mean by what I wanted. And truthful friends most the time I didn't know my name. I thought Tom was my Dad and was really confused. At no point in my stay I was I at myself to sign and legal papers. These things has to stop.
As I talked to the reportor the other day this was one of the main points I had to get across to him. Is no one but me surprised that when we are dx that we are never told how to breath. How we need to change it totally. I have also found that he was told if he quit smoking all would be well. He thought his lungs would heal and go back to what they should be. Yet his comon sense told him then why will I be dead in a year then. He said he was adding two plus two and getting 5 so he researched. He was furious at the heartache he had put his family through in the preparing for his death. This has to stop and it we all have to take our o2 and wheel chairs and line up across Canada and the U.S.A. then man the chairs and crab the o2 bottles. And I will meet you at the border.

[Blossom/Jackie W.]

Although this thread got a "considerable" number of views; not a HUGE number voted. But; every bit helps for wht I'm attempting to do.

Gotta tell you all something though ....some of your stories just down right blows me away....

Many thanks to those that voted; and better still, shared "their story"

[LindaNY]

Yes, if a person doesn't already have one ready, it should be discussed. Our hospitals all ask upon admission or treatment in the ER.

Since I have worked in the medical field for over 30 years, I have had one, as well as a health care proxy, ready and on file with all important people since they first came out.

[virginia]

I voted no...I was dxed in 92 and they asked the same old cig. question's then ......
..There is nothing we can do for you except a lung transplant..and those cost 100,000 $ sure its more now ..but gave me some prescriptions ..didnt say come back or anything..Anyway i havent been the same since..although did learn more about COPD (must have learned more than they seem to know) .... and have seen several more doctors they all tell me the same.. So from staying up with all the info from the forums.And Gods grace..I think ive done pretty good..I have lots to be thankful for..and best of all have lots of friends... these new ones here... and some older one..And 3 new grandkids since 92.

[MarthaK]

In my opinion, advance directives/living wills and health proxies are an absolute must for everyone, whether you have an incurable illness or not. You never know what sort of illness/accident might befall you. For instance, I live in "tornado alley" and for most of the year, live with the knowledge that I could be gravely injured. I also drive an automobile and put my life at risk every time I drive/ride on the streets and highways. As another example, one of my daughter's friends who is in her 40's recently had a heart attack...who would have thought that would happen to a person who, to all appearances, as well as to herself, was healthy and had no health issues. I don't think having an advance directive/living will in anyway is an indication that death is impending. When I gave my advance directive and health proxy to my doctor, he thanked me and told me it was a responsible thing to do. The health proxy is extremely important. That document gives someone else, of your choosing and who is in agreement with your choices, the right to make decisions for you if you are unable to.

[MarthaK]

Just thought of another example...do you recall the case of the young Florida woman, Terry Schiavo, who was in a persistent vegetative state and did not have an advance directive? Her case caused much heartache for her family and ended up in a court battle. This was a case of a very young person having expressed her wishes to her husband but who never took the time to prepare an advance directive or health proxy.

[Blossom/Jackie W.]

I totally agree with you Martha...thank you for your post.

I guess my point was/is....do you think that you should be faced with trying to make that decision when you're first told "you have COPD". My preference would be to allow the person to get over the initail shock first. To be told "You have COPD" and in the 2nd breath told, whether given a booklet or have a Dr say basically, "Go home and make out your will " or "Get your afairs in order"

It's all something we have to whether we have this disease or not. But my point is that if you are told those things, upon initial diagnosis, it can send many people I think into severe depression and they simply "wait to die".

[kygal]

Blossom,

You are sooooo right...it should NEVER be included in the visit with the diagnosis. Doug was told to quit smoking and that he had terrible lungs. But, because of not knowing much and "life" getting in the way, this was pushed aside for at least 5 years. By the time he'd gotten so much worse and we finally got to see another specialist, that doctor told him he "might" have 2 years...and this was the first time we saw him. Our family doctor had already given up and would only treat him with TONS of prednisone and antibiotics, never testing to see what was causing the problems.

Imagine our shock when we were told, first time seeing a doctor, that Doug "might" have 2 years left...and his best hope was stem cell trials. You can look back with "what if's" and wonder if we'd taken things more seriously 5 years earlier if we'd been told that or what would have happened...and I sometimes wonder if the extra problems now are from that diagnosis or what. But, we can't live on "what if's" and just have to move forward from here and make things the best we can for now.

Hugs,

Mary

[MarthaK]

Jackie, perhaps they could preface the information about advance directives with some language indicating it is something everyone should do no matter the state of their health, and that including the information in the brochure in no way should be construed as an indication of prognosis. I agree that including the information in a careless manner might serve to depress the patient and evoke a do-nothing attitude. However, when you have a life-threatening illness, I think you should know so that you can begin to think of the things you need to do to preserve your estate, provide for your dependents, etc., to say nothing of realizing the urgency of taking good care of oneself. I've read many stories on these boards of people having been diagnosed who discounted the seriousness of it and went on their merry way smoking, and ultimately getting themselves in much worse condition. I suppose it really depends upon one's mindset. I prefer to be informed.

[LindaNY]

Exactly Martha. Everyone needs to have one.

[spike99]

I'm not sure how someone is initially treated immediately AFTER being diagnosed with COPD. Haven't experienced it myself, so I really can't press the YES or NO button. My vote would be based on unexperienced bias. So, I'm unable to vote at all. However, I would like to add the below.... Note: I'm assuming you are collecting info to "lobby" for something better in the future. Thus, my below might help as well.

----------------------------

When I was initially diagnosed with Pre-Type 2 Diabetis, my GP immediately explained "it isn't the end of the world. People do live a normal life with Diabetis. Sometimes, as long as a normal preson and some times not. What influences how long I will live is how I treat my body going foward...". I would assume the same statements are also made to someone immediately diagnosed with COPD. For my diabetis, I was given some office glossies and told to read them at home. Parallel to this task, my GP booked me on a special Diabetis course. A full 1 day course that I was also allowed to bring my wife. They taught us about "buying proper foods", they taught us about "proper physical exercise", they taught us about early health signs (to watch for going forward) and more importantly, they "taught both of us how to change my lifestyle" - due to my new illness. This course was free and they also had 2 follow up sessions as well.

During this course, my wife and I were amazed on all the great stuff we needed to do. Stuff like "read & understand food labels" before buying the item, follow the Canadian food groups (re: www.cbc.ca/news/background/food/updating_foodguide.html ) and many other great things. Stuff "we as society" should be teaching our kids in school. Forget the enriched math and enriched history, one should be teaching this "how to properly treat your body" information instead. Then, our kids (our future) won't encounter the same health problems we have today. On a positive note, our kids now have a much better food, much better physical exercise and much better sleeping pattern lifestyle. This is one great thing we learned from our free "living with Diebetis" course.

If not done so already, I would recommend that if a person is diagnosed with COPD, they are also given some glossies and told to read them at home. Parallel, "the person and their spouse" is booked on many FREE information transfer courses. Stuff like better exercise, how to avoid pollution, better food quality, etc. etc. Stuff that will make one's life with COPD last much longer. Perhaps this is why folks diagnosed with diebetics are given these same "change your lifestyle" courses. For every day one is kept away from the hospital ER room, the previous Free courses has done its job. Perhaps free courses can be given to newly disagnosed COPD folks as well???? Thus, win-win on my fronts - especially in the long run...

BTW: Is there any courses offered by your local hospital on "how to live with COPD"? If not, I wonder if such courses should be offered on a QTRly or semi-annually basis? Might be worth it in the long run...

Hope this helps as well....

.

[Blossom/Jackie W.]

Thank you everyone for taking the time and responding. And yes Spike the info is intended to be passed on. As a matter of fact; MaryAZ had posted a link for brochures you could get on COPD from the Will Rogers Institute. I wasn't sure they send them to Canada; but they did. I requested the info becasue I wanted to see if another organization (other than the Lung Association) addressed a living will /advanced directives etc in their info booklets.

They didn't.

I think we all agree that it's a necessity and should be addressed.
Most of us also agree it shouldn't be done upon "initial" diagnosis.

That's my point.

Again; thank you all.

[Deleted]

Of course I was still smoking when my Dr. gave me the COPD diagnosis in 1993. He told me to get my affairs in order, make sure my will was up to date and to establish my medical directives.
He was hitting me with his medical hammer trying to get me to quit smoking. It was supposed to shock me and make me a non-smoker.
It worked, I quit in 2004.
I voted yes.

Joe - Tx

[Blossom/Jackie W.]

That's great Joe! It's been 14 years now for you. WTG!!! I hope you have many many more.