end of life directions question

[BetsyB]

Re: ramblings afterward ... Toby's gone

I am so sorry to hear of your husband's suffering and your own, and of your loss. You sound like you were an amazing CALS.

I am newly diagnosed and am trying to sort out my wishes for end of life decionmaking, so I want to ask, if it is not too raw for you to write about, how did your husband define suffering that was for him intolerable?
I think there are several ways to define it and I am trying to learn what are the most useful ways of defining it.
Inability to communicate, physical pain, air hunger, emotional pain of excessively burdening the family, loss of cognitive functioning? what else?
Thank you for your post.
Betsy

 

[Nikki J]

This post was copied from in memoriam to give it a place for discussion without detracting from the condolence thread for Need Courage's Toby

 

[NeedCourage]

Re: ramblings afterward ... Toby's gone

Hello Betsy,
I was saddened to hear of your diagnosis. Your questions are excellent. Hopefully those who have experience in offering answers/suggestions will see this. I will try to write more later today. I'm just so tired.
One thing I do believe with my whole heart - it's very good and important to ask these questions early on. You are brave and I admire your willingness to seek. I may be just too 'raw' right now to be of any real help. Keep looking!


Nancy

 

[affected]

Betsy I think this is something very individual. What is intolerable for one person is acceptable for another.

There is a document you have in your country called a living will. It goes through all these kinds of things for you to document what your wishes are, and it best filled out with a doctor so that the medical terms and differences in decisions can be made with full understanding.

 

[BetsyB]

Tillie,
Thanks for your response. Yes, as you say, the Israeli ministry of health has published a form for dying patients to fill out as an advance directive. I have the form here and I am going to fill it out.
the categories of "signficant suffering" that it lists are
requiring artificial feeding
unconcious
quadriplegic
dementia

and then there are blanks to fill in for

"requiring the following treatments"

and
"being in one of the following states/conditions"

right off the bat, i can decide that i am prepared to try to stay alive if i need a PEG or if I am quadriplegic or become demented. But the others are murkier, like "unconcious" ought to be more clearly defined as "unconcious with no hope of ever regaining conciousness."

anyway, the form is designed to help a patient override doctors' default treatment decisions, so i have to try to understand the defaults and then decide if and how i want to override them.

it is a lot of work, but i hope the discussions will strengthen and calm my family about whatever will happen.

one question to you and everybody--has any PALS that u know of opted to stay alive when locked-in on account of the joy of being able to RECEIVE communication and touch sensation from family and caregiver?

Betsy

 

[affected]

Hi Betsy, I think this is why it really should be filled out with input from your doctor to ensure you understand just what each question means, and state your wishes clearly.

I do apologise as it's a living will in the states, it's called an Advance Health Directive here in Australia.

Our one however has 2 parts and you only have to fill out one part. First is the regular one that is very detailed, second is one for people who are already terminally diagnosed that is far simpler.

When we filled it out for Chris, in a nut shell, it boiled down to stating that if something happened and it could be fixed and he was likely to be returned to the same condition he had been in, then permission is given. If something happened and he would end up worse than he was before that event (so if he were to be vented but would not regain consciousness, or if CPR was done but he would have lost even more functionality due to damage, things like that), then he did not give permission for any active treatment.

He was a definite DNR.

When he reached a point that things were getting too much for him, and we had a stay in hospital with aspiration pneumonia, he said to me - no more hospital.
We registered with palliative care early after diagnosis. So this means in Australia that he could die at home and there would be no investigation.

4 weeks after the pneumonia as he continued to decline, we worked with palliative care nurses who would talk to his doctor, but he just stayed home and passed very peacefully here with just me tending to him. That was how we wanted him to pass.

Having everything well stated in a document, and an understanding between us allowed me to accept that he was actively dying, and give him loving care in our own home. I've had a lot of peace with his death. No real peace with the disease and the processes of loss that led to there, but peace with how he could end it without fear.

I hope that helps a little.