BS: Today

Subject: BS: Today
From: Jerry Rasmussen
Date: 12 Feb 05 - 06:43 PM

Today, my sister went up to the hospital to disconnect her husband from life support. He has been losing ground to emphysema the last couple of years, has had two heart attacks and has been on oxygen for the last year. In recent months, he got so weak he couldn't walk, and they thought he'd never walk again. Then, last week he got double pneumonia and was gasping for air. They rushed him to the hospital and his lungs finally collapsed. They put him on life support and told my sister that there was nothing left to work with. They had him heavily sedated, and he was no longer conscious. The Doctors told my sister that the only thing she could do was to disconnect him from life support, because he would never be able to live without it. So, she called us and the rest of the family, gathered their children from around the country and went to the hospital today, together.

When they arrived at the hospital, the Doctor met them and told them not to do it. My brother-in-law's vital signs are all good, and they believe that he is healing. He will have to be on life support until they get rid of the pneumonia, but they think he will be able to breathe again, using an oxygen tank as he had been.

My sister called me tonight, and my wife and I are joyful beyond description. We are completely overwhelmed!

I am not trying to "Cram my faith down anyone's throat." I am not telling anyone else what to do with their life. I am not judging anyone else.

If it's alright with you, I'd just like to say

PRAISE THE LORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jerry

Subject: RE: BS: Today
From: Amos
Date: 12 Feb 05 - 06:47 PM

Blessings Be!!

Congrats to the whole clan, Jerry. Savor the joy of it, knowing no matter that it is temporary, it is still miraculous.

A

Subject: RE: BS: Today
From: Jeri
Date: 12 Feb 05 - 07:04 PM

I'm not religious, but I can't see how anybody could be upset by your expression of joy. I DO like hearing about things that go better than expected. So many of them don't. I hope your brother-in-law heals and finds joy in the days he nearly missed.

--Jeri

Subject: RE: BS: Today
From: Sorcha
Date: 12 Feb 05 - 07:18 PM

OH, Jerry! No prob with the message, but what are HIS wishes? My dad lived 9 mos after this sort of thing, and he was NOT happy about it. The hospital ignored a DNR order. His last 9 mos were truly miserable, and he wished they hadn't happned.

Subject: RE: BS: Today
From: skipy
Date: 12 Feb 05 - 07:53 PM

Jerry, I am an athiest, but I am moved by you story, I respect your right to believe in what ever you wish, more than anything else I share in your joy & hope that it is not short lived, I look forward to hearing that your relation is having a reasonable quality of life, hope it all pans out for you all.
Skipy

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 12 Feb 05 - 08:46 PM

Thanks, all..

Just to clarify the situation. My brother-in-law Dean asked to be kept on life support, so it is his choice. Of course, nothing is guaranteed. Before the pneumonia, he was making a reasonable recovery from his last problem, was getting around reasonably well with a small oxygen tank, and even though he is unlikely to ever be able to breathe without assistance, there is still hope that he can resume a fairly normal life.

Many years ago, I regularly went and performed for a group called Better Breathers. All of them had lung problems of one kind or another, and most of them were carrying small oxygen tanks. They were living fairly normal lives, but couldn't go anywhere where someone was smoking. They really appreciated the music.

There is also a man in the Men's Chorus I sing in, who often sang next to me. He had serious lung problems and reached a point where he was so weak, he couldn't even lift his hand to shake hands and was confined to a wheel chair. Ruth and I used to go visit him in the hospital, and it looked like he'd never walk again. At one point, he was scheduled (and waiting for) a lung transplant. It's been a long haul for him, but he is back in church, very active as a Deacon and going to visit the sick in the hospital. He has been using a portable oxygen tank from time to time, but there have also been times when he's recovered enough so that he doesn't use the oxygen and is talking about rejoining the Men's Chorus.

I realize that there are more depressing stories than hopeful ones, but I also have seen the medical profession completely dumbfounded by
what some people see as miraculous recoveries. Two days ago, the wife of a dear friend of ours came home from the hospital. It really looked like we would lose her. She too has emphysema and serious heart problems. She had become so anemic that she could no longer walk without assistance. But, she seems to be regaining her strength, and is breathing well enough so that she doesn't have to go on to oxygen.

There's no need for believing what the cause of a seemingly miraculous recovery is. It's perfectly logical to just accept it as a miss-diagnosis of the medical profession. They are certainly known to do that. I am not expecting anyone to believe what I believe. But, to know that my brother-in-law was a day away from having life support turned off, and now see that he has hope is a great, great joy. And I think anyone can understand that. I'm so sorry that things turned out so terribly for your father, Sorcha. But, no one can know how the choices we make in life will turn out. You just have to make what seems to be the best choice.

And so we rejoice, knowing that tomorrow is not promised to any of us. All the more reason to cherish today...

Thank you all for your kind words..

Jerry

Subject: RE: BS: Today
From: LilyFestre
Date: 12 Feb 05 - 09:46 PM

(((((((((((((BIG HUGS))))))))))))))))
How is your sister holding out? I imagine she is drained beyond belief....I'm glad your family is there to be with her....amazing..truly amazing!

Michelle

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 12 Feb 05 - 09:51 PM

I spoke to my sister tonight, and she i joyful beyond description. All of their kids gathered together, preparing for a funeral, and tonight, they all went out to eat together. And celebrate. She hasn't slept in a week, and probably won't tonight either. But, it will be from excitement, not depression.

Jerry

Subject: RE: BS: Today
From: jimmyt
Date: 12 Feb 05 - 11:18 PM

God be with your Brother-in-law and sister and God Bless you, Jerry.   THere is no doubt about it,   you are da man!    Hope you all have some peace   jimmyt

Subject: RE: BS: Today
From: Teresa
Date: 12 Feb 05 - 11:32 PM

That is wonderful news! I'm crossing my fingers for your family,Jerry. :)

Teresa

Subject: RE: BS: Today
From: GUEST,ragdall
Date: 12 Feb 05 - 11:38 PM

Jerry,
That is a wonderful story. So good to see a happy outcome, rather than the one I anticipated, reading the beginning.

Sometimes it's difficult to have faith and continue to pray for miracles. Your family has truly been blessed today. PTL!!!

rags

Subject: RE: BS: Today
From: Kaleea
Date: 12 Feb 05 - 11:49 PM

Sometimes things just turn around like that, thankfully! And, I do not begrudge anyone who proclaims praises to God by whatever name they use for God. It reminds me of a song that begins, "Make a joyful noise unto the Lord, all ye lands!"

Subject: RE: BS: Today
From: Peace
Date: 13 Feb 05 - 12:24 AM

Good news, Jerry. Hugs to you and Ruth. I think it was you who said on another thread, "I thank God for each new day." Yeppers, buddy, yeppers.

Subject: RE: BS: Today
From: freda underhill
Date: 13 Feb 05 - 03:40 AM

wonderful things happen, raise life and love. i am very happy for you and your family, Jerry!

best wishes

freda

Subject: RE: BS: Today
From: Liz the Squeak
Date: 13 Feb 05 - 03:59 AM

Oh Jerry, there aren't words to say what this feels like.

Thank you for sharing what is a deeply personal thing with us.

LTS

Subject: RE: BS: Today
From: Jeanie
Date: 13 Feb 05 - 04:40 AM

Wonderful news, Jerry.

- jeanie

Subject: RE: BS: Today
From: GUEST,Rapaire
Date: 13 Feb 05 - 10:01 AM

I don't know that it was a missed diagnosis, Jerry. Nor do I know that it was a miracle in the biblical sense (Lazarus, et al.). But I do know that the human body and the human mind and the, well, call it "the Life Force," are far stronger than we give them credit for being and that we are all capable of things of amazement.

Whatever. Give 'em all a hug.

Subject: RE: BS: Today
From: Azizi
Date: 13 Feb 05 - 11:18 AM

Jerry.

There are more things on heaven and earth
than we- who think we know so much- can ever
hope to understand.

I am still grieving for a loved one who passed 3 monts ago.
Yet, through my tears, I still join in with those who praise God from whom all blessings flow.

Some one said "God is good."

And the folks responded "All the time".

Someone said "God is never late."

And the folks responded "But He's right on time."



Thanks for sharing your family's wonderous experience, Jerry,
Azizi

Subject: RE: BS: Today
From: fat B****rd
Date: 13 Feb 05 - 11:40 AM

Grand news, Jerry. I'm so pleased for you and yours.

Subject: RE: BS: Today
From: Alba
Date: 13 Feb 05 - 11:43 AM

Blessings, Light and Love to You and all the Family Jerry.
What a roller coaster ride for the emotions.....phew....
I personally don't care what anyones Beliefs are...only where their Heart is.....
For me, I will say Blessed Be and may all work out to the Good in Time.
Sending {{{{{{hugs}}}}}} and wishes of Strength to all your Family but especially to your Brother and Sister....:>)
Jude

Subject: RE: BS: Today
From: MBSLynne
Date: 13 Feb 05 - 01:21 PM

Oh Jerry....I'm so happy for you and your family. I echo the Blessed
Be of some of the others. And I'll try and remember the lesson in this...that each day is precious to all of us and we should take a few seconds every day to thank who or whatever we believe in, or just generally be thankful.

Love Lynne

Subject: RE: BS: Today
From: Bill D
Date: 13 Feb 05 - 01:39 PM

I am a VERY strong believer in allowing each person to decide whether they want to keep fighting when health declines so far. The body can fool us, and there are many remarkable recoveries, no matter what you attribute this to.

It is always good news to hear of someone winning a battle like this and gaining more time with their family and friends.

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 13 Feb 05 - 02:22 PM

Thank you all for your warm, loving prayers and well wishes. When one rejoices, all rejoice. And I am very much with you, Bill D.
\
When my brother-in-law went into the hospital, he told my sister that he didn't want to go onto life support, and if they put him on it, it was his wish that he be disconnected. By the time that my sister and their kids all went up to the hospital yesterday, he had gained enough awareness of what was going on that he told the Doctor that he didn't want to be disconnected. Whatever happens from this point froward, my brother-in-law removed a terrible burden from my sister's shoulders. He has chosen to live, with all the risks and pain that entials.

You read about this kinda stuff all the time, and if you're like me you probably don't give a lot of thought to it. When faced with it (or trying to comfort and support someone who is) you realize what a horrendous, difficult decision it is to have to make for someone else's life. Life is always simpler in the abstract. It only gets complicated when you have to live it.

In the last two or three years, I have shared heartaches and joys with many other Catters who have brought their stories here. They are always a good reminder of what is of true value. I knew a woman who bitched endlessly because her Mercedes wasn't the color she wanted. In the meantime, her husband was near-killing himself working on a job where he was ridiculed and demeaned. He told his kids "I'm worth more dead than alive" because he had $100,000 in life insurance. That couple was probably the poorest couple I ever met. Gated community aside..

Jerry

Subject: RE: BS: Today
From: jacqui.c
Date: 13 Feb 05 - 02:56 PM

Good news Jerry - there is always something to be thankful for. I hope that your brother in law makes a good recovery and is with his family for many years yet.

Subject: RE: BS: Today
From: Bobert
Date: 13 Feb 05 - 06:25 PM

Well, sniff, also being a brother in Faith, I have my own testimonial. Back around 15 years ago my grandmother, Louise Oliver, at age 93 wound up in a long term care facility because she seemed to be no longer able to walk. I visited her every night after work and about two weeks into her stay there, I said, "Wanta go dancing?" She laughed and so I said, "No, really, grandma."

Next night, same.

On the 3rd night I said to her, "Heck, grandma, if you won't go dancing will you at least go for a short walk with me?" to which she replied, "Okay..."

Well, sniff, I helped her outta the bed and she held her weight as she tried to stand. After a few minutes she was standing by herself, asmitted while still holding on the hospital bed. I think she was amazed since most folks in that facility die there. I told her how I just knew that she had it in her. Over ther next few days I got her up every night and slowly but surely got her walking. The nurses were amazed to see that 93 year old woman who only wieghed about 80 pounds walking down the hall with me at night...

Then one night she said to me "Let's blow this pop stand." The following day my mom picked her up, drove her back to my grandmothers apartment, where her 3 cats and nasty little dog were happy to see her home. She lived another 5 years in that apartment with her cats. The nasty dog died, no sniff here, before going into a nursing home where she was a real charactewr right up to her death at a ripe age of 101.

Now I know that my grandmother was not a woman of Faith, might of fact she was a rather ornery woman, but she knew I had faith in her being able to walk again and so I think that the Big Guy just put some extra umph into me to pass along. And though she never thanked Him fir those years, I sure 'nuff did...

So know, Jerry, that Dean is squarely in my thoughts and my prayers and when he gets to feeling like doing a little reading print off this tread fir him, will ya?

Bobert

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 13 Feb 05 - 08:38 PM

Wonderful story, Bobert:

Here's one appropriate for this thread.

For many years, Art Thieme and I split an evening once a year at the Cafe Carpe in Fort Atkinson, Wisconsin. Eventually, the Carpe moved to Madison, Wisconsin for a couple of years, and I ended up doing an evening on my own, there. Art was up north on vacation somewhere with his wife Carol and son Chris. It felt strange, singing at the Carpe without Art. But, shortly after I started the first set, who walks in the door but Art, Chris and Carol! It was a great pleasure to see him.. and made us even, as I had surprised him a few years ago when the Carpe was in Fort Atkinson, and he didn't know I was home.
Art, Chris and Carol settled in, sitting by my family.

And when I sang the line:

"I'm getting kinda tired of shooting old pop bottles
Out at the sand and gravel with my Uncle Dean" from a song I wrote, Caroline, Dean lit up. Dean wasn't really my uncle, but we all called him that. Fit the song better, anyway. Dean was really pleased that I remembered the times he took me out to the sand and gravel pits to target practice when I was 14. He was part of the fabric of my life.
And until further notice, still is.

Jerry

Subject: RE: BS: Today
From: Big Jim from Jackson
Date: 13 Feb 05 - 09:34 PM

Jerry, I'm glad you got the Lonnie Donegan CD. When you play it, I am sure you will gain a new respect for him---a guy I know you were influenced by.
I went through a somewhat similar situation with my mother, so I know a bit about how your family feels, especially Dean's wife. Be strong. Know that whatever happens is for the best. Let your family wrap themselves in their own and God's love. It will make either outcome bearable.

Subject: RE: BS: Today
From: Teresa
Date: 13 Feb 05 - 10:14 PM

Wow, this place just never ceases to amaze me. [huge sniffs :) ]

Thank you, Bobert and Jerry, for shining your lights. And thanks to everyone else for doing so, too. :)

Teresa

Subject: RE: BS: Today
From: Bobert
Date: 14 Feb 05 - 07:31 PM

And, Jerry, Dean *is* part of the fabric of your life. His passing, be it soon or in 10 years, can't alter that.

In my life it *is* Earl Gorby. He moved next door to where I lived when I was about 14 years old. He was probably in his mid 20's at the time, had a real purdy wife, Tammy, and an youngin' in diapers. Well, my dad was never into wooods kinda stuff so when Earl one day asked me if I wanted to go hunting with him, I jumped on that invite... I'll never forget it. Our first hunting trip was to hunt rail birds and we went to an area over in Clifton, Va. and hunted a long a small river. It rained all day and was cold and it seems that we shot maybe a half a dozen rails in an afternoon which amounted to like enough meat to feed, at best, a couple of folks...

But when we returned home, got into dry clothes, he took me down into his basement where I discovered that he was an amateur taxadermist. Over the next year, he taught me how to hunt, clean and even stuff animals. We also rebuilt a Cushman motor-scotter...

Yeah, Earl was my Uncle Dean, sho nuff was...

Bobert

Subject: RE: BS: Today
From: Col K
Date: 15 Feb 05 - 07:15 PM

I hope that everything continues to go well and you can be sure that you and your family are always in my thoughts.
Much love to You, Ruth and all the family
And to the Messengers
Colin

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 15 Feb 05 - 08:22 PM

Thanks, Colin:

Waiting for the Shellbacks to come back to Capistrano. Or at least New Jeresy.

Jerry

Subject: RE: BS: Today
From: YorkshireYankee
Date: 16 Feb 05 - 04:00 AM

The perfect time to sing a joyful song... unto whatever higher power you care to sing to! Sincerely delighted to hear your truly joyful news!

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 17 Feb 05 - 02:41 PM

Thanks, Yorkshire. The news is good, but still very guarded. They're taking my brother-in-law off life support and keeping him off until he starts struggling and they put him back on. But, each time they take him off, he's able to stay off longer before he runs into trouble. There is real hope now that he will be able to be weaned completely from the life support.

By the time we go out to Wisconsin to celebrate my Mother's 98th birthday in early June, I look forward to seeing Dean getting around and joining us for the celebration.

Jerry

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 21 Feb 05 - 10:27 AM

Today, they're moving my brother-in-law Dean to another hospital where they specialize in rehab treatment. It's just a little over a week since the decision was made (and then decided against) to disconnect him from life support. He still has a rough road to travel, but there is hope now.

And we are very thankful for that.

Jerry

Subject: RE: BS: Today
From: GUEST
Date: 21 Feb 05 - 10:49 AM

I'll be leaving Wednesday to go visit my father, who is dying of emphysema. My mother just passed away in January--she died on lung cancer and emphysema.

Emphysema is an incurable, progressive disease. While doctors often prescribe respiratory rehabilitation therapy for the disease, it is really done as a means of last resort, because nothing makes the disease "better". The disease not only results in enlarged, damaged lungs, but also an enlarged heart, which often is the cause of death.

The "best case" prognosis most doctors are willing to give to a patient with severe emphysema is five years, and if your brother in law has been "losing ground" for several years, he may just be reaching the end of his road. Which means the most compassionate thing may be to encourage the family and patient to get counseling about end of life care, and beginning to let go so his suffering will end.

And the prolonged suffering from this disease is awful to both experience for the patient, and endure from the loved ones' perspective. Be careful about praying for the miracle of life in these circumstances. Having your prayers answered may not be best for the patient, especially if the loved one isn't ready to let go, and allow the patient to die. If this man said he didn't want to be put on life support but was put on it anyway, I'd say there is a real possibility of your sister manipulating the situation. She absolutely is NOT "free of the burden" of making the decisions about his care. This is but the beginning, and sooner or later, the decision to remove him from life support will have to be made.

This is where I would advise trying to find a really good hospice program, so your sister can get the counseling she needs to let go, and do what is best for her husband.

Just my .02, but I've been in the thick of this emphysema thing for 10 years now with both parents.

Subject: RE: BS: Today
From: GUEST,Raggytash
Date: 21 Feb 05 - 11:05 AM

Glad to hear someone has good news, however how about saving some of that praise for Doctors, Nursing Staff, cleaners, cooks, administrators who run the hospital

Subject: RE: BS: Today
From: GUEST
Date: 21 Feb 05 - 11:24 AM

While you might find a doctor or two here and there who are willing to send patients on mechanical ventilation home, the vast majority of people with emphysema who are put on ventilation live the rest of their lives in an institution. My guess, from the information Jerry is providing, is that his brother-in-law is being sent to the rehab hospital on the ventilator. That is because nothing further can be done for him in a hospital, and in all likelihood, he would die if the ventilator is removed. Which WILL happen, regardless of the family's hope to the contrary.

When an emphysema patient reaches this stage, it is called "end stage" for a reason. It isn't unusual for families to hold out hope for a "recovery" in these instances, especially when the patient has rallied and gotten better in the past. But having to put a patient who has been through what this patient has been through (according to Jerry, that is--2 heart attacks, 24/7 oxygen therapy for a year, double pneumonia infection, and being put on a mechanical respirator without giving his consent and AFTER telling his wife/legal guardian not to do it) in a rehab setting just means the medical folks are assuming that this is the end.

Families, especially spouses, often go through a rationalization--including faith based rationalizations--to justify the medical decisions they are making on behalf of their loved ones. In this case, it sounds to me like Jerry's sister had her husband put on the mechanical ventilator while he was unable to make that decision for himself, after he had told her NOT to put him on a mechanical ventilator.

Once a person in this circumstance is on the ventilator, especially if they aren't "with it" enough to know what is really going on, it is impossible for them to fight it on their own behalf--especially if their loved one isn't willing to let them die.

These are the saddest of cases, IMO. I'm really glad we eventually talked my mom out of going on a mechanical ventilator, and to accept that she was dying and shouldn't use that as a means of prolonging her suffering or ours. I'll always bless her for loving herself and us enough to not make us fight that fight for her.

My father has also been very clear about his wishes regarding mechanical ventilation. But then, he is married to a nurse, who has explained it all very clearly to him. He knows that there is no more "improvement" coming for him. His journey is nearing the end.

Subject: RE: BS: Today
From: GUEST
Date: 21 Feb 05 - 11:46 AM

BTW, I'm not saying there is no hope of weaning Jerry's brother in law from mechanical ventilation. Pneumonia represents a potentially reversible condition from which the patient may recover fully. Mechanical ventilation does not serve only to "prolong death" but offers a chance to return to his previous level of functioning. Many patients with even end-stage emphysema can be successfully weaned from mechanical ventilation.

But weaning him from mechanical ventilation, if it can be done, won't end his suffering. In end stage, while there may be hope of another couple of months off the ventilator, there isn't really any hope of an improved quality of life. You just linger longer than if you hadn't been put on mechanical ventilation to begin with. And one of the catch 22's of putting emphysema patients with pneumonia on the ventilator, is that the ventilator can cause the pneumonia to come back after it has been "cured" by antibiotics.

Jerry's brother in law may indeed "recover" and be successfully "weaned" from the ventilator. But he is still going to die of the disease or it's complications, and his death is coming sooner rather than later. Sometimes, once the patient and family accept that fact, the borrowed time they get from mechanical ventilation can allow them to accept and prepare for the death. If that is what transpires for Jerry's family, he indeed can be thankful. But as Sorcha also pointed out, that isn't necessarily the way things will go, despite the doctor and family having "hope".

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 21 Feb 05 - 12:18 PM

Thanks for all your concern and imput, Guest (and Raggytash.) Just to clarify some things. In no particular order, I give great thanks to the Doctors, nurses and medical profession for the hope we have. I thank God for working through people. The Burning Bush thing isn't an every day occurrence. We are all extremely greatful for the care and expertise of the Doctors.

We also are thankful because my brother-in-law has chosen to go through the rehabilitation. It was his decision, and should he continue to suffer, it will be his decision to refuse further help.
At this point, I don't know a lot about the treatment he will be going through. I understand that it is to clear up the pneumonia that brought him into the hospital in the first place. Whether he recovers enough to breath on his own with a portable oxygen tank, as he was doing before he was taken down is unknown. I doubt that the Doctors even know for sure. He's been on oxygen now for a few months, although he has had shortness of breath for a couple of years. It was only last summer that he started to use oxygen.

I realize (as I'm sure my brother-in-law and the rest of the family does) that emphysema is uncurable, and my brother-in-laws days are numbered. Perhaps he will get another year or two of reasonable living from this treatment, or he could go tomorrow. I too think that he will go from a heart attack. I think we are all being realistic about his future. The only questions are "when" not "if". The other important question that only my brother-in-law can answer is whether life will be worth living. Right now, he has decided that it will be, and is giving the Doctor's the approval to try to clear up the pneumonia and see where they go from there.

All of these are hard questions, and anyone who has suffered through them know that the "good news" at best will be short-lived. My greatest thanksgiving is that my brother-in-law is taking charge of his life, and how ever much he has left. I am also thankful that he has a strong faith. I've seen faith carry people through the darkest valleys, giving them comfort and peace. That's what we all hunger for.. comfort and peace.

Jerry

Subject: RE: BS: Today
From: GUEST
Date: 21 Feb 05 - 12:59 PM

The biggest difficulty in these situations is that the mechanical ventilator prevents the patient from talking. Often, the patient cannot write either, as the lack of blood oxygen quickly causes other muscles to deteriorate.

It is very difficult too, to understand what exactly someone in this circumstance means when they attempt to communicate their wishes. The treatment options, and potential outcomes are extremely complex to explain, to comprehend, and then try and communicate one's decisions about them while not being able to talk or write.

For instance, if the patient was brought to the emergency room without a surrogate decision maker, and was presenting as awake and alert and complaining of shortness of breath, and the evaluation reveals pneumonia is present (as was the diagnosis here), and the potential risks and benefits of mechanical ventilation were explained to him, and he chose to change his mind and begin mechanical ventilation, then of course the right decision was made, because as long as the patient themselves have the ability to make the decision, the doctors must honor the patient's decision.

However, in another similar scenario, where the patient is brought on their own without a surrogate decision maker to the emergency room and is presents confused and barely conscious, and has already deteriorated to the point where he can no longer communicate with medical staff at all, the decision to begin/not begin mechanical ventilation is much more difficult and complex, living will or not. Because pneumonia is potentially a reversible condition, and mechanical ventilation can be used to keep the patient alive until the treatments begin to work and the patient heal, it is a very tough call, unless the patient is known to the medical staff and they realize that treatment of even the pneumonia would be futile because of the "end stage" scenario.

It is much more difficult to make the decision not to intubate and begin mechanical ventilation in the latter case, ie when it is known the patient is already in end stage emphysema, and the surrogate decision maker suddenly shows up at the emergency room and insists upon both the pneumonia being aggressively treated (which isn't an unreasonable request in most cases, even end stage emphysema) AND the patient being put on mechanical ventilation in order to survive long enough to receive treatment for the pneumonia, which may or may not work.

Those are the saddest cases, as Sorcha points out above. And sadly, it looks to me like it is possible that is the scenario unfolding with Jerry's brother in law. Of course we always "hope for the best". But sometimes, the best is never having been put on the ventilator to begin with. If he is being moved to the rehab hospital with pneumonia still present and still on the ventilator, it could well be the decision about removing the ventilator could come very soon, ie if the pneumonia isn't reversed. Things can quickly and/or suddenly reach the point where it is clear the treatments are not useful or of benefit to the patient in any way.

How does one determine that? Well, the way our mother's pulmonary specialist explained it to us is, treatment may be "futile" when it no longer fulfills any of the goals of medicine. In general, these goals are to cure if possible, or to palliate symptoms, prevent disease or disease complications, or improve functional status. In some cases, the patient is clearly unable to voice a wish to have treatment withheld or withdrawn (ie can't talk on the ventilator, and too weak and/or confused to communicate effectively in any reasonable way). If there is no written advanced care directive, the doctors must rely upon their own judgment, in consultation with surrogate decision makers familiar with the wishes/values of the patient.

Some patients do change their minds about end-of-life decisions when they actually face them, which may be the case with Jerry's brother in law, though it is really hard to tell when the person can no longer speak for themselves. That is why it is important, especially if you haven't drawn up a living will, to discuss the subject with multiple family members, but much more importantly, with your personal physician who will be involved in the final decisions about withholding or withdrawing treatment. Sometimes the patient is awake, alert, and conversant, but their decisions seem questionable or irrational. Yet, it can still be very difficult to distinguish an irrational decision from simple disagreement. If the surrogate decision makers (including the doctor and family here) feel strongly that a certain course of action is "what's best" for the patient, it can seem irrational for the patient to disagree. In these situations, it is critical to talk with the patient and find out why they disagree, if possible.

The word "competent" is really loaded, both emotionally and legally. That is why nowadays, good medical professionals try and determine if a patient has "decision making capacity" rather than whether they are "legally competent". With my mother, we actually executed a durable power of attorney for health care last summer, when it became apparent that her deteriorating condition was robbing her of consistent and sound decision making capacity. She was sometimes alert, sometimes not. She could talk, but often refused to communicate. She suffered from depression. She would change her mind and decisions from day to day. On the other hand, a person can be incompetent about some things, like the ability to manage their financial affairs, yet still be able to make sound medical decisions about the course of their medical treatment, including refusing treatment which my mother did on a number of occassions, especially as she became more and more ill.

In general, the capacity to make treatment decisions, including the withholding or withdrawl of treatment, is considered intact if the patient:

1. Understands the clinical information presented
2. Appreciates his/her situation, including consequences with treatment refusal
3. Is able to display reason in deliberating about their choices
4. Is able to clearly communicate their choice.

If the patient does not meet any one of these criteria, then their decision to accept or refuse treatment should be questioned, and handled in much the same way as discussed for the clearly incompetent patient.

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 21 Feb 05 - 01:38 PM

Dear Guest:

Man, my heart really goes out to you. My Mother is closing in on her 98th birthday and in some ways is stronger than my older sisters. It is very painful to project myself into the situation that you found yourself in, and I really appreciate your sharing your experiences with me.

May we all go like my Father. When my Father was a few weeks short of 93, and still living in an apartment with my Mother and healthy enough to get around well, he had a heart attack early one morning. He'd had smaller attacks before... I was even there when he had one and his speach became incomprehensible for about a minute. This was a scary one though, and my Mother called the health care center. They sent a couple of nurses over to the apartment and called for an ambulance. In the meantime, my Father was comfortable, leaning back in his easy chair and cracking jokes to make the nurses and my Mother relax. And then suddenly, the big one came, he pitched over onto the floor and was gone. My Father came as close to dying, laughing as anyone I've ever heard of.

What a blessing to all of us..

Jerry

Subject: RE: BS: Today
From: GUEST
Date: 21 Feb 05 - 02:31 PM

Thank you Jerry. It would have been nice if my mother and father would have gone that way too, but they didn't and won't.

COPD/emphesyma is the 4th leading cause of death in the US today. It just isn't realistic anymore to "wish" that we won't have to deal with these scenarios.

Your sister and brother in law are in that scenario now, so perhaps you can share some information with them and give them encouragement to seek out hospice professionals. They may very well need it. Maybe not immediately, but they should be planning for it now. It will make everything so much easier, better, etc if they do.

Guilt over decisions made/not made by surrogate decision makers can be devastating, particularly when combined with grief. Hospice professionals can really help a tremendous amount with both.

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 21 Feb 05 - 02:34 PM

Good advice, Guest: I think my sister is beginning to accept the inevitability, whenever that should come. She's fortunate that she has my other sister and my Mother living in the same town, as well as six children to support her. She certainly does have to begin dealing with what is coming down the line, whenever it happens..

Thanks again.

Jerry

Subject: RE: BS: Today
From: GUEST
Date: 21 Feb 05 - 02:47 PM

Wow. With that many people "supporting" her, you should encourage her to follow her own gut instincts. Thankfully, we didn't go through this very much (although it was touch and go with 2 of my 4 siblings for awhile when they remained in denial about mom's condition), but some family friends did when the 4 adult kids, mom & mom's relatives had some disagreements about "what was best" for the dad who was dying of kidney disease/renal failure.

Only one person should be making the decisions as surrogate, and that is your sister, in consultation with the doctors, her minister, and maybe one other trusted person.

Not everyone in the family will agree with her decisions much less support them, but she is the one who has to live with them the rest of HER life. Support her that way, is my advice. That is one thing that someone at a distance can do, when there is a potential (especially with adult children) conflict or potential interference by well intentioned family and friends trying to influence your sister's decision making for her husband. That can be really tough.

Subject: RE: BS: Today
From: Jerry Rasmussen
Date: 28 Feb 05 - 08:09 PM

I was really happy that Animaterra refresehd the thread about her Mother and her accident, so that we could hear the good news.

Today, I spoke to my Mother and my brother-in-law Dean is confounding everyone. He got up and sat in a chair for three hours today, and has been off life support for as long as 8 hours at the time. They didn't have to put a tube in his throat and do a trachotomy (sp?) and while talking is a strain for him now ,and he's not supposed to do it at all, he surprised my sister the other day when she walked in and he said "Hi!." He's being transferred to another hospital where they will help him in his rehab now, and the Doctor's are hopeful that he wil be able to come home after he is completely weaned from mechanical support and rebuilds his strength.

Thanks to all who have sent good wishes and prayers. He may get out of the woods, yet.

Jerry