my duty related to brain donation

LadyTexan

DH and I are not in agreement related to organ donation, including brain donation. One of us is for it and the other is against it.

I am DH's POA. I understand that to mean that I will perform according to his wishes, not my wishes.

If brain donation is to happen, it requires my signature since he is no longer able to sign due to his impairment.

I have researched the position of our respective religions on the matter. Neither prohibits the procedure as long as the remains are treated respectfully and with reverence.

Here's a hypothetical question - 

A) Which factors weigh the heaviest for decision making purposes:

1. the benefit to science and future generations (presumed greater good), 
2. his wishes,
3. my wishes,
4. available documentation regarding his preference.

What would you do?

As always, I appreciate your feedback.

-LT

Quilting brings calm

In my opinion, number 1 properly falls as a reason as to WHY someone would choose to donate their brain- so it’s a subset of either 2 or 3-  depending on which one of you is for it.   Number 4, accordingly, is a subset of number 2.  It helps you to  know what his wishes are.  That is similar to whether or not  he’s filled out DNR papers or a living will to to let you know whether he wants certain measures to be done to save his life. Doesn’t mean that the situation at the time won’t override it.  

My thoughts- if he wants you to donate his brain,  then you have to decide if you have the ‘stomach’ to do that.  If not, then don’t.  He’s not going to know.  Religious objection on your part would be an acceptable reason to say no- or even just being squeamish about it

If he doesn't( and didn’t when he was well) then I would honor his wishes. 

If you don’t know what he wanted when he was well - then go with what you want.  No one should try to talk you into or out of it as that decision is yours. If you don’t want to… some other spouse will decide to donate theirs in the interest of science.  So you aren’t really impeding scientific study by saying no. 

I personally have checked the box on my DL to donate my organs - but I have told my spouse he is free to override that if the time comes.  He has to do what he is comfortable  with. He doesn’t seem to be personally comfortable with donating his, so I will probably say no on his behalf if the time comes. 

Jo C.

In my thinking, this is about ethics.  By the very virtue of being given his POA, you have  the obligation to follow his wishes, whatever they may be.

There is not sufficient information provided in the Post to come to a clear assessment.

When was the initial determination document made as to what your husband wanted?

Was your husband competent to understand and make such a choice when that document was created?

What does the initial documentation clearly state and was this a legal document made through an attorney or was it a document your husband, himself created? 

Either a legal document made through an attorney, or a personal document written by him would be binding and his wishes followed from that time into the future EXCEPT, if at a later date, a change is made in that decision by him.

Did he change his mind and make a different choice even if that choice is an oral one and not a written one?  If so; was this done while he was still competent to basically understand his choice?  That then would be the new decision to be honored and followed.  (Also, aPOA must.)

HOWEVER, If he changed his mind and was not fully competent to understand the dynamics of that choice, but he made his choice whether done orally or in writing, it continues to be about ethics:  It is his brain, therefore, it is his decision whether you feel it is right or wrong.  Though not contributing to what you feel is, "the greater good" of science and humanity, I would honor and respect the choice as his  choice to be followed, because it is. The "greater good," at that point it is his personal choice about his body.  (Also, a POA must.)

Ethics.  His choice overrides anyone else's personal feelings; even a spouses.

At this point, unless he brings it up himself, it would not be ethical to raise the subject with him to encourage (manipulate) him to change his mind.  For me, that would be unethical.

Basically, bottom line is - his wishes would override your personal choice if it is in opposition to his.

Others may have different opinions; this is just me.

J.  

dayn2nite2

I would honor my LO’s wishes, even if I want something different for myself.

Battlebuddy

Well I recently  filled out the paperwork and my husband was excepted to the Brain Bank a month ago. I didn’t do it right away , and never had a conversation with my husband about it , but he was not an organ donor on his license. I also didn’t discuss it with my kids. 

   For me it was just something I felt strongly about. I didn’t know whether he was for or against it but He had signed up for a drug trial but didn’t qualify . He did want to do something to help cure this disease. That was important to him. Honestly this is the only way he can help now. He will be transported to a hospital after passing away where they will do an autopsy. 

  As time has gone on I have found that I want to know what autopsy will say. Did he have Frontal lobe Dementia? Was the diagnosis right? And then they will take a small sample to send to a major research hospital . After that they say it does not interfere in having an open casket but ours will be closed anyway.  The program does require a PET scan so that would have to be done. In your case that couldn’t be done now. 

   I hope that helps. I will tell the kids but haven’t found the right time. I guess as time has gone on and I’ve watched this terrible illness destroy so much. I don’t want anyone else to have to go through this. We need a cure. That simple thought  pushed me forward. 

    

Joydean

Lady T, as POA you do have to follow his wishes, not claiming to be a lawyer! It’s the way I understand it. 

My DH and I are both organ donars and have been for many years. Neither of us want a funeral . We both have discussed cremation and that is our choice. Biblical there is nothing against our choice. But that’s our choice. I believe each person has to make their own decision. 

Pray about it and you will have your answer. I hope you are doing well. I think of you often. You have been a great inspiration for me. 

harshedbuzz

LT-

Organ donation is such a personal and visceral choice. In your shoes, I would make the decision that will be easiest for you to live with going forward. Full stop.

If you can't bear the thought of additional medical procedures after all your dear husband has been through, you can say no. If you need as much information as possible in hopes of understanding what happened in the last 5 years, you can say yes.

Did he feel an obligation to his son and grandchild to help provide answers for their futures? Was he a proponent of organ donation in the days before he developed dementia? 

Is this a donation that needs to be prearranged well in advance of his passing? If that is the case, you could make the choice by procrastination. Certainly, your days are full with more important tasks right now.  

HB

Ed1937

When your wishes are not the same, that makes it hard for you. I'm sorry about that. But if it were me, I would follow his wishes, as long as he was competent when he made them known.  There will be other brains donated, and if his is not one of them, medical science will not suffer.

LadyTexan

Thank you all for your input. 

I am the one that wanted to donate DH's brain to the brain bank. I am a registered organ donor and he is not. We have had a conversation about organ donation, in general, in the past. He was opposed. I brought up brain donation to him sometime since we have been living in the retirement cottage. Although his disease was advanced, I believe he had sufficient awareness at the time of the discussion and he declined.

I am so eager for Alzheimer's disease to be abated, I wanted our suffering to at least help others. I know I am obligated to follow his wishes, not mine. I am comforted by the comments of others, stating that other brains will be donated and research will continue.

Thanks for being my sounding board yet again.

M1

Thinking about you LT.

If it helps you at all in your thinking, my personal sense is that while brain donation is valuable and I too support it, I'm doubtful the answers we all seek about dementia are going to be found in the end-stage specimens. I suspect the real clues are going to be in the donations from accidental deaths earlier in life. Kind of like what is going on with the CTE research in football players now.  The damage and changes probably start much much earlier than we give it credit for.

I have many times thought of dementia as part of the spectrum of organ failure we see with aging. We're more used to thinking about heart failure, kidney failure, liver failure, copd, arthritis--add brain failure to the list.  We're just much more ignorant about the potential causes, it seems.

If this is on your mind it tells me you must be anticipating the end. With you in spirit. Trying to practice your lessons of gratitude... I'm grateful for you tonight.

Pat6177

LT, you said “I wanted our suffering to at least help others.”

Please know that all you have shared here on this forum has helped me in so many different ways! You have been so open with your challenges, it has educated all of us. And that’s a big deal!

And your faith and gratitude in the face of your suffering has given me a role model for coping as my DH’s dementia progresses.

Rest assured, your suffering has helped many others already. Thank you.

Jeff86

Well said, Pat 6177.  Concur completely. 

 LT, you’re a total heroine, inspirational in your honesty, openness, positive attitude, generosity of spirit.  You have indeed helped others so much.  Grateful for you.  

LadyTexan

Yes, M1. I do suspect the end is near.

Many night's I have thought that DH was on death's doorstep because of his erratic breathing. He has stopped eating entirely. Swallowing is difficult for him. I have been instructed to give him ice chips. He enjoys the ice chips.

Yesterday, the hospice nurse guesstimated DH has 2-3 weeks left. He is so miserable, I would be fine if it happened sooner. I know this will happen on God's time. Because of my faith, I am not afraid. I trust in God.

I am overcome with sadness. I am grateful we had the time we did together. We have had many joyful moments and happy memories. I am very blessed to be his wife.

Thank you for responding. I know that you are going through a tough time. Last time I read your posts, your partner was turned away from your preferred facility and the hospital completely effed up her meds. I am so sorry for the pain and frustration you are experiencing. 

Hang in there. I will too.

God bless everyone here and their loved ones.

Battlebuddy

Lady Texan, 

   I’m so sorry you are where you are. That has been such a steep decline. Such a difficult time for you. 

   I just wanted to say if I knew my husband didn’t want to be an organ donor , I would respect his wishes. Also just being practical, there is a lot of paperwork involved. You need to submit all his medical records which then has to be reviewed . That process can take about a month. So rest easy if you wanted to do it , you probably have run out of time anyway. 

   You have been a strong woman of Faith throughout this ordeal. It’s not easy to do. This illness messes with our minds, emotions, and yes our faith. I’m sure the Lord is proud of his daughter and is right there with you. 

   We are lifting you up in prayer. 

   

JJAz

Perhaps it's not an issue that you will need to deal with.  We were told that most centers are no longer accepting Alzheimer's diagnosed brains; their "quota" is filled and they are only accepting FTD, LBD, etc.

abc123

Dear LT, I talked with my dad twice about donating my mother's brain for research purposes. I believe if she had been asked about it at the start of this journey, she would have said yes! 100% she would have said yes. My dad says 'NO". He is in charge. 

Jazz, thank you for letting us know about the "quota" being filled. I hope you are doing well. I think of you often. You have always been an inspiration to me.