disagreement with my husband/cals about end of life decisions

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Kristina1

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This is mainly a vent..

We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions.

While talking about this I told my husband when the time comes I DO want a trach, but if afterwards I am miserable and have no quality of life I would reserve the right to take it out and let nature take its course. He already knew (and agreed) with wanting trach, but I guess he did not realize I would consider removing it if my quality of life became too poor. He got upset and said if I got a trach he would want me to keep it no matter what, that removing it was basically committing suicide. For religious reasons this was unacceptable to him. I totally disagree, to me it's obvious that it's not suicide. It's choosing to end an intervention and accept the consequences, which are that my body would naturally die.

I am totally shocked that he had such a different view. I thought we were on the same page. And it scared me because I was planning to name him as my health proxy/representative.

Now I'm just feeling very emotional about the whole thing and our disagreement.
 

ShiftKicker

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Kristina, do you have a religious advisor or counselor within your community you can speak with? I had a similar discussion with my husband a while back, and it's shocking when they disagree on strong moral grounds that don't match your own, despite assuming similar beliefs and sharing the same faith.

I am sorry this happened between you- especially when it's about your own choices, your faith, relationship and trust. Having conflict around such big decisions is unsettling. That's really rough.
 

Kristina1

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Shiftkicker, thank you, exactly it was a shock and unsettling. One issue is I am not very religious but my husband is, so we do have some differing views, but i thought this was a spot where we would have been on the same page. In fact, I feel fairly confident that if he spoke with an 'imam' (my husband is muslim) they would reassure him that discontinuing an intervention is not considered suicide from a faith standpoint. So yes, I think that's a good idea to have him talk to someone he trusts for guidance. I just really did not expect this and it left me shaken, wondering if there are other things that will come up where we aren't on the same page. I guess it really is time to talk all of these things out, but it is such a painful subject I know we both struggle to confront it. All I want to do for the rest of the day is watch netflix and pretend none of this is real.
 

notBrad

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My and I have the same issue - she is very religious and I am an atheist. She spoke with several people who are devoutly religious and to a person they all assured her that turning the vent off would not constitute suicide.

That said, I am dependent on the vent so it is not quite as drastic I think, although this is purely my take on it.

Also, I am very happy with my trach. It is so much better than the mask I was wearing. Brushing my teeth and shaving is a breeze now, I can kiss my wife without getting short of breath and so on.
 

lgelb

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In reading up, I think I see where he is coming from. Traditional Islam before today's technology could be read as fairly dogmatic on the issue of maintaining life support once it has begun. This is something to consider not just in terms of his being your proxy and implementing your wishes, but in terms of the effects on him if those wishes were implemented via a third party.

That said, like all religions, Islam is evolving, there are different spectrums of thought, etc. I have attached a study of Muslim physicians, that mentions that a majority do support quality of life considerations, and that also mentions fatwas that have been implemented in Saudi Arabia hospitals, in which withdrawing life support is allowed where quality of life is poor and will not improve, and includes some scriptural support for this view.

The Islamic Medical Association of North America also published a Islamic medical ethics guide that supports your wishes, from my skimming. You might want to share it with your husband as it too has scriptural quotes.

I noticed that two of the authors of the attached paper are in your neck of the woods, so they might be able to discuss some of these considerations with your husband as well, from both a medical and Islamic point of view, as might other members of the Islamic community.
 

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Kristina1

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notBrad thanks for sharing, also for sharing your positive experience with being on a vent, that is encouraging to hear. The religious differences can be hard to deal with in light of this disease. My husband wants me to pray and things like that and it's a source of discomfort to both of us that we disagree on this.

thanks Laurie, that's very helpful! My husband is Shia, but shias tend to evolve their interpretations/rulings to modern times more flexibly than sunnis so i think he will find answers we can both make peace with. we will look into it more, in fact your link reminded me that I know a good shia site where he could probably look this up. But I do think he will respect my wishes even if he disagrees with them. We talked more this afternoon and I feel better about it.
 

KarenNWendyn

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Hopefully he can find some common ground with you that he is comfortable with.

I think ongoing discussions about end of life issues are important. Make sure he understands some of the sorts of scenarios you would consider unacceptable to be kept alive for, and why they would be uncomfortable for you.

He probably needs more time to come around, but ongoing discussion will help. I think it’s also important for you to learn more about his beliefs and where he’s coming from. That way you can work towards finding common ground.

Kristina, I’ve always appreciated your posts because you bring up many evocative topics.
 

dldugan

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My wife and I are just starting this journey. It must be your decision and can hopefully be done/planned in a way that that your husband can support. Others are making good suggestions.
 

Vincent

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One thing to keep in mind is this doesn't have to be your final decision. I'm sort of on the fence with the trache decision. Today I still walk, talk, and use my hands. So if I had to decide tonight, my answer would be yes. If I find myself later on only able to lay in my chair and drool, I might say no. But I'm not there yet. End of life decisions should be made as part of an ongoing discussion, not as a decide now and we're holding you to it. The choice is your's to make, not anyone else's. Include the family in the decision so everybody understands.
Vincent
 

KimT

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Kristina,

I'm going to come at this from another angle because I have very strong faith and I also have some Muslim friends, both conservative and liberal.

Maybe his position really isn't about religion. Maybe the thought of losing you is overwhelming to him given that you are so young and have small children (beautiful ones, too.)

Anyway, you're in my thoughts and I hope that you and he can come to an agreement with your husband. I think the more you talk, the more likely he will be to understand why your wishes are what they are.
 

Atsugi

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I'll add my thoughts for your consideration. I hope this helps.

In your position, you might approach this first from the perspective of a Shia Muslim, and secondly from your own perspective. Thirdly, you might consider having a disinterested party become your health surrogate, to relieve your husband of the emotional burden when he is so emotionally close to the patient and asked to make difficult decisions.

FIRST: From the moral and ethical perspective, religious authorities agree: Normally, to suicide or not to suicide is a choice. But when a person has an incurable terminal disease, it is the disease doing the killing, the patient has NO choice--so there can be no sin without choice. All the patient can do is choose to manage what few variables remain. It's not suicide--it is MANAGING the dying process.

I know nothing of Islam, but I have found references on the net. Shia Islam, they say, recognizes a difference between "withholding" medical care and "withdrawing" medical care. But when the care is "palliative" for an incurable terminal illness, suffering is not required, and comfort is allowed.

SECOND: Ask him to see this from the perspective of a dying person.

R-E-S-P-E-C-T

When it is my turn to go, and I'm weakened and barely able to speak, I want my written wishes obeyed.
Can you imagine refusing a dying person their choice of how to go?
It's my life, my death, I'm an adult and all the risk and reward, all the suffering and comfort and fear will be MINE and mine alone. No One Should Go Against My Wishes.

THIRD: Note that this is such a difficult decision when he is so closely involved. A more disinterested party, perhaps a lawyer, could be your health surrogate.

Others will disagree, but there are my thoughts for you to consider. I hope it helps. Good luck.
 

Kristina1

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Thank you all for your wise and thoughtful input. It has helped me sort through my own thoughts and feelings and how to approach discussions with my husband. I'm glad I reached out here!
 

Narrowminded

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Kristina - as a CALS, to my husband who has been vented for 8 years I’m going to throw my 2c into the ring.

We had some very blessed times at the beginning of his trach years. That last year and a half have not been so great. He is determined to hang on until he is locked in, if he doesn’t go sooner. That is his wish and I will do everything in my power to make that a reality. On the other hand, if he asked me to take him off the vent, I would do that too. It would be difficult as his wife to think I was “causing” his death. As asking for the vent to be turned off, is basically the same in my mind, so I understand where your husband is, religion or no.

All that said, I also really bothers me seeing him stuck in the bed with only being able to move his eyes. That is very hard as well. It’s be coming harder and harder to try and determine what he wants/needs due to this. He is also now struggling with his eyegaze. So I can absolutely see how you could feel about it being the one in the bed. And if you got to that point, it may be easier to for him to see it from your side.

No matter which way you come down on this subject, it’s very difficult. I am so happy that you are willing to discuss there issues now, before they are actual issues. DH refused to do much talking, so that has made it a bit more difficult at times.

Keep talking, I know the two of you can find a resolution. Time sometimes can be a huge help in understanding.

Hugs
 

jjbell

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My husband has also completed his end of life form. He doesnt want any vent or tube or anything to prolong his life.😕. Hes also signed a DNR form. It us not suicide and not against Gods laws. We are Jehovahs Witnesses.
 
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