BS: life and death decision

Subject: BS: life and death decision
From: GUEST,petr
Date: 02 Jun 08 - 01:10 PM

well, today we probably decide on my dads life.

at 76 with congestive heart failure, he went on peritoneal dialysis about 2 years ago. Even though it didnt look good at the time, he recovered, especially with my mom's care and he could enjoy his granddaughter and a second one that was born in the meantime.

A few weeks ago, he got an infection -which is often treatable, but this one proved harder, and it weakened him quite a bit.
Because its a fungal infection - to fully treat it means removing the catheter and starting antifungal medication - but going to hemodialysis. The hemo may be a bit risky for him because it takes out 3-4 litres at a time and with his low blood pressure may cause a heart attack.

of the 3 options, none were good, continue antifungal and leave the tube in (which Im told usually doesnt work*). 2nd was takeout the catheter and continue treatment and start hemodialysis (but its risky). The 3rd option was palliative care - basically make him comfortable and let him die.

*a second doctor told me that it does.

Now he was told by one doctor he had maybe 2-3yrs tops. (10 years ago)
A second doctor told him when he had the catheter put in that 'it's probably the end of the road' (2years ago).

In the past week and half he has actually started eating more and regained some strength, the infection has cleared up somewhat but not completely. This afternoon we are meeting with the doctors to go over the next step.

Now he is the classic self made man, having lived through a poverty stricken childhood in the German occupation of the Czechlands and WWII. Later the Soviet invasion in 68 as well as raising a family, escaping to Canada with nothing and eventually starting a successful business which employs a number of people. He is a man of intelligence, humour and talent and even though I am prepared to say goodbye I would like my young daughters to get to know him some more.

Subject: RE: BS: life and death decision
From: Morticia
Date: 02 Jun 08 - 01:16 PM

why can't he decide, if you don't mind my asking?

Subject: RE: BS: life and death decision
From: jacqui.c
Date: 02 Jun 08 - 01:36 PM

petr - a difficult time for all of you, whoever has to make this decision.

All good thoughts coming the way of your family.

Subject: RE: BS: life and death decision
From: GUEST,petr
Date: 02 Jun 08 - 01:41 PM

I got cut off before I could finish. We are meeting with the doctors this afternoon to discuss the next step. He is competent, and quite able to decide for himself - although he has some mixed up moments due to the infection. And in fact we arent deciding FOR him either, he is aware and wants to continue as well, but the doctors seem to talk to us as if he is not in the room and (at least seems to me) they are expecting us to decide.
In fact when I first came to the hospital and the doctor gave me the above options, he was prepared to accept my or my familys decision. I was surprised that my dad's say in the matter didnt seem to come in to play.

I suspect they dont want to worry him and let him get depressed, although he obviously realizes it may be the end.

Subject: RE: BS: life and death decision
From: heric
Date: 02 Jun 08 - 02:06 PM

I haven't faced this yet petr and have no wisdom, but I wish you all the strength I hope to also find someday.

Subject: RE: BS: life and death decision
From: katlaughing
Date: 02 Jun 08 - 02:24 PM

It is so hard, especially when it is one of your parents. From what you have said, I think I would start by asking the doctors to address him, directly, with you there, of course. There is little enough dignity left when one has to have invasions of their body, the least they can do is acknowledge his mental competence and include him as an "interested party."

I wish you all the best possible outcome and I am giving thanks he has plenty of time left for your daughters to know him even more. Grandchildren are quite motivating in the will to live department, imo, and from my own personal experience.

{{{{{{petr and family}}}}}}

kat

Subject: RE: BS: life and death decision
From: GUEST,petr
Date: 02 Jun 08 - 02:40 PM

thank you for your thoughts kat and others.

Subject: RE: BS: life and death decision
From: gnu
Date: 02 Jun 08 - 03:09 PM

petr... "I was surprised that my dad's say in the matter didnt seem to come in to play."

Me too!

If "...he is aware and wants to continue as well...", there it is. Doc's be damned.

Thoughts and prayers.

Subject: RE: BS: life and death decision
From: GUEST,lox
Date: 02 Jun 08 - 03:18 PM

Sounds like you know where you stand already. You want him to keep going and you'll help him fight all the way.

And sounds like he won't need any encouragement.

You may have to get used to him being around for another 20 years!

But seriously, you are right to start preparing yourself emtionally for the worst and whatever the outcome a good dose of family support from you and yours will do all of you no harm whatsoever.

I don't know for sure as it will be a long time (probably) efore I am ever faed with such decisions, but I can't imagine that I'll give up my grip on this life that easily.

love love love!

Subject: RE: BS: life and death decision
From: Rapparee
Date: 02 Jun 08 - 06:41 PM

His hold on life is wonderful, surviving as he has. My thoughts are with all of you.

Subject: RE: BS: life and death decision
From: Little Hawk
Date: 02 Jun 08 - 07:02 PM

Best of luck with this, Petr. It sounds like your father is quite a man. Best to let his own instincts and yours as a family call the shots on this one. Doctors don't know everything.

Subject: RE: BS: life and death decision
From: Bill Hahn//\\
Date: 02 Jun 08 - 07:07 PM

Philosphically, I always feel we come into this world the same way but leave in so many different ways and, surely, the easiest way is to leave life's stage rapidly and painlessly. Sadly, that is not an option or what happens to many or, perhaps, most of us.

Petr, I have been through some of your problems with a relative at a much younger age. Happily, the doctors always included her in any conversation and decisions.   I found that she, and I suspect your father ---who seems like a strong person---would be the best one to make any choices. A living will is a good thing to have but is really of import when a person is incapable of rational thinking. That is, surely, not your case.

Much hope for the "right" choices and also for a lifting of any feelings of indecesion or guilt.


Bill Hahn

Subject: RE: BS: life and death decision
From: catspaw49
Date: 02 Jun 08 - 07:26 PM

I can't begin t tell you how much I love or hate doctors. I have trashed 4 different cardiologists until I found someone who talked to ME......its MY body and as a family, its OUR decision. I kinda' want to be included.....and I am pretty sure your Dad does too.

Whichever Doc you trust, grab him and tell him that he needs to discuss this with your Dad and the rest of you will participate with HIS permission. I don't know all your details but any Doc who won't play that way is not the Doc you need, especially now.

Good Luck with it all. You have all already learned that some estimates of life are wildly off the mark. Go with the Doc with the right attituder ("Here's the truth and I'll answer your questions but YOU decide")...........Not an easy time and I wish you the best and send my best thoughts.


Spaw.....Died 6 years ago

Subject: RE: BS: life and death decision
From: Rabbi-Sol
Date: 02 Jun 08 - 07:46 PM

Nobody but your father himself has the moral right to make this decision affecting HIS life as long as he is mentally competent to make that decision.

If you are located in Canada where National Health Insurance is in effect, I suspect that the doctors involved are looking more at the dollars and cents cost to the system rather than your father's best interests.

SOL

Subject: RE: BS: life and death decision
From: GUEST,petr
Date: 02 Jun 08 - 08:07 PM

Thanks again for all your thoughts. And I agree with you Rabbi-Sol
although it hasnt been mentioned at all I suspect $ has something to do with the options they are giving us.

We met with them today, and insisted on including our dad in the discussion as well as his decision. They seemed to be pushing palliation
the most, even though his health has actually improved somewhat since he arrived. He decided and we agreed that its better to give it a shot than give up (after all, he has proven them wrong in the past).

We are not talking about major surgery but basically moving to hemodialysis which may be a stress on his system.
WHen they outlined the various 'risks' of hemo I asked them what the 'risk' of palliative care is. Needless to say I didnt get an answer.

thanks again, all of you.
petr

Subject: RE: BS: life and death decision
From: GUEST,lox
Date: 02 Jun 08 - 08:13 PM

Well done!

More power to your arm!


... we think you should tuck him up in bed and wait for him to slip away ...

BOLLOCKS!!!!





Like I said ... well done!

Subject: RE: BS: life and death decision
From: catspaw49
Date: 03 Jun 08 - 12:49 AM

"When they outlined the various 'risks' of hemo I asked them what the 'risk' of palliative care is."

Beautiful petr......and exactly right. Very well done and you all have my best thoughts on the road ahead no matter where it may twist and turn.....The traveling is in your hands!

Spaw

Subject: RE: BS: life and death decision
From: Uncle_DaveO
Date: 03 Jun 08 - 02:06 PM

Looking at it from something like your perspective (not his), after a relative dies it's common for the survivors to have terrible attacks of guilt--"If only we had . . ." or "I should have done thus and so." Going with palliative care (if it were to be your decision) is a recipe for lifelong regrets. Whereas if you roll the dice and you lose, you know you did what you could.

Dave Oesterreich

Subject: RE: BS: life and death decision
From: katlaughing
Date: 03 Jun 08 - 02:33 PM

petr, thanks for letting us know. Good for all of you for including your dad and for giving their passive preference a pass. Here's to your dad and the time he has left and to your family and the getting to know him better for your girls.

all the best,

kat

Subject: RE: BS: life and death decision
From: GUEST,petr
Date: 14 Jun 08 - 01:32 PM

Just to follow up this thread.
Last week my dad had the central line put in. Which was done with no problems. (It a tube for hemodialysis which goes into his neck vein and almost to his heart). The following week he had hemo 4 times. The 1st time about an 1 1/2 and each later time was 3 - 3 1/2 hours.
Last tuesday we met again with the doctor, who hadnt yet removed his pd. catheter to fight the infection. Once again there was subtle pressure to introduce the palliative team, but again we felt that he had gotten this far and he also wanted to continue trying and the doctors scheduled the removal and further dialysis. He even spoke to the doctor and thanked him for his time.
The following day (wed. June 11th)however he lost his speech and seemed to fall into a semi-conscious state, the nurse took us aside and told us he is dying. We all then decided to discontinue any further treatment
and move him into palliative care - they put him on an air bed which is more comfortable. Once in a while we could get his attention and ask if he heard us and he said he did. A nurse told us that people who come out of that state report hearing and understanding everything.
Later thursday evening when he became slightly more aware we were all around him and spoke and tried to comfort him. He often had his eyes closed and looked into the distance. At one point however he looked directly at me and gave me his hand, and he then shook my brothers hand. I see that it was his way of saying goodbye and thanking us for being his sons.

Earlier, in his semiconscious state he looked as if he was sobbing,
but my mom said later that evening as he was more relaxed that he was singing. She could even make out bits of the melody. It was 'Hes got the whole world in his hands'. Now my dad was not at all religious because his family never was, but he remained agnostic.

I dont know what the meaning of that was or what was going through his mind,

Subject: RE: BS: life and death decision
From: GUEST,petr
Date: 14 Jun 08 - 01:44 PM

...

but I like the thought that one of the last things that went through his mind was music.

He died at 5am on friday June 13th.
He was almost 76. He and my mom were together for 57 years (married for 52).

As painful as it was, and he will always be a part of me, it was a privilege to be with him in his last days. I think for him as well it was a beautiful way to go with family around, all differences forgiven.

at a later time I will post a link to his memorial and celebrate his life and achievements.

Good bye Dad, we love you, thank you for teaching us the important things.

thanks again for all your comments and support.
Petr

Subject: RE: BS: life and death decision
From: Liz the Squeak
Date: 14 Jun 08 - 01:49 PM

So sorry to hear the news... there is no good time to go, but surely this was the best time for him, at his own behest and with family around him.

Thoughts and prayers for you and your family.

LTS

Subject: RE: BS: life and death decision
From: EBarnacle
Date: 14 Jun 08 - 02:01 PM

I wish I had gotten onto this thread earlier. PD is a very good system of hemo but you must maintain what is basically a clean room around the treatment location. It is very easy to get an infection due to the various microorganisms in the air.

Hemo, if initiated promptly, can keep people alive and functioning for upwards of 30 years to my certain knowledge, as this used to be my field of employment. The probability of infection is much lower and, because of regular medical supervision, the patients are less likely to become seriously ill. In addition, if the patient is strong enough, dialysis can keep him available for transplant.

Many patients say they hate hemo because they have to schedule their lives around it but appreciate the life it gives them.

I grieve your loss, Petr.

Subject: RE: BS: life and death decision
From: Janie
Date: 14 Jun 08 - 02:38 PM

I'm so sorry Petr.

Peace and light to you and all your family.

Janie

Subject: RE: BS: life and death decision
From: katlaughing
Date: 14 Jun 08 - 04:16 PM

My condolences, Petr. Surely, when the time is upon us, we'd be fortunate to have friends and family nearby and a song in our heart as your dad did. I am sure you were an honour to him, as well.

May peace and ease of grief be yours,

kat

Subject: RE: BS: life and death decision
From: SINSULL
Date: 14 Jun 08 - 05:09 PM

Your father was a great man, Petr. Thanks to you he died with dignity. Remember that as you grieve.
Mary

Subject: RE: BS: life and death decision
From: GUEST,lox
Date: 14 Jun 08 - 05:56 PM

Yes.

He went with dignity, and with his freedom to choose his own destiny intact.

But

More importantly.

From HIS point of view

He went knowing that you would NEVER sell him out and would back him up to the hilt and respect him no matter what.

He went with his heart overflowing with pride and love ...

... for you!

And any parent knows that that is the greatest and happiest feeling on earth.

Therefore in paying your last respects, you must accept that you are worthy of all that and allow it to give support and buoyancy to your life.

You sound like a couple of diamonds.

Subject: RE: BS: life and death decision
From: Donuel
Date: 14 Jun 08 - 06:07 PM

Your father was so very lucky to have you near.
That you could share with us is brilliantly illuminating of all our comings and goings.

Subject: RE: BS: life and death decision
From: GUEST,heric
Date: 14 Jun 08 - 06:45 PM

This is a powerful story. I wish I could craft an acknowledgement as well as those just above. I will just have to adopt theirs. He did go strong, with strong family around him.

Subject: RE: BS: life and death decision
From: AllisonA(Animaterra)
Date: 15 Jun 08 - 07:57 AM

Dear Petr, Many blessings and light and love on you and your family as you grieve your father and remember him with love. What a blessing that he was able to be part of the decisions and that he knew of your love and care for him to the very end.

Allison

Subject: RE: BS: life and death decision
From: catspaw49
Date: 15 Jun 08 - 09:07 AM

Your family has been in my thoughts since you first posted.   I am sorry for your loss but I am proud and admire the decisions you made together giving your Dad the ability to die with dignity.

My very best to you all.

Spaw

Subject: RE: BS: life and death decision
From: GUEST,petr
Date: 15 Jun 08 - 11:46 AM

thank you all for your comforting thoughts. It really does help ease the pain, to share this. Of course Ive been talking to other friends and family as well.
I agree with you Ebarnacle that hemo might probably have been the better treatment. The reason the doctors recommended pd is because of his end stage heartfailure, he had a bad valve -which he was probably born with
because he was told about it back in his army days.
I think since hemo removes a lot more fluid - it might be more strenuous on his system. ONe never knows. But the last few months his blood pressure had been slowly dropping.
thanks again.
I will make a post about him in the fathers day thread.

Subject: RE: BS: life and death decision
From: katlaughing
Date: 15 Jun 08 - 09:01 PM

What a remarkable man, petr. Thanks so much for posting about him in the other thread. I've come to the conclusion, once again, that Mudcatters are a remarkable lot come from remarkable people and your dad is a prime example, as well as yourself. We are honoured by your sharing.

kat

Subject: RE: BS: life and death decision
From: EBarnacle
Date: 16 Jun 08 - 11:23 AM

Thanks for the response. Hemo can be performed in such a manner that little or no fluid loss occurs over the course of the treatment. The longer the individual treatment [4 hours instead of 3 or even 2.5] the easier it is on the patient. I was discussing a similar issue with a renal physician a few days ago and he mentioned that system shock is now almost entirely preventable with proper treatment.

Subject: RE: BS: life and death decision
From: GUEST,connie
Date: 29 Jun 08 - 09:06 AM

Subject: RE: BS: life and death decision
From: Tig
Date: 29 Jun 08 - 04:19 PM

((((((((((((((((((((((( petr and all involved))))))))))))))))))))))))))

At least he had the chance to choose for himself. Better than just giving up. John's Mum just gave up last month because she had had enough.

Love and hugs
Tig
xxx