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Steele

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My dad keeps saying he doesnt want to wake up. He hates that he cant do anytjing but is refusing almost all interventions (peg, walker, scooter, wheelchair, etc... he does have a bipap and cough assist but only uses it about 5 hours at night instead of most of the day as per dr). We keep trying to explain that he can improve his life greatly by just getting a scooter but he refuses.

Anyway. His quality of life is not what he wants and he's depressed that nothing will get better. He keeps mentioning that dying would be better than this. Anyone deal with this at all? We're in Canada so i suppose the laws may be different. I cant bring myself to tell him about it because its just so so terrible and sad. But ALS itself is SO terrible and sad and at least this way he wont suffer so much. Just needed a place to say all this with people who actually understand. Thanks for reading and for any advice you can give.
 

lgelb

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Steele,

I'm sorry to hear that your dad has perhaps progressed beyond his idea of a worthwhile life. Please know that this happens to most PALS if they live long enough. But it's not certain that your dad has reached this stage.

The real question is for you to think about is: how far are you willing to go, to clarify and possibly act on his wishes? I would suggest first having a real conversation with him about what he is asking of you, to clarify whether this is unwanted depression that could be addressed with medication and/or counseling, vs. a deeply-held belief that he should not go any further -- far beyond the emotion of the moment.

Through active listening, you may also find that he is projecting how much of a burden he is and will be to you and others, in which case you can deal with that.

It sounds like you yourself are struggling with these emotions, so you might seek to clarify your own feelings first, even with a trusted family member or friend if needed.

As to your question, in Canada, as anywhere else, the law and "real life options" can be two different things. If you circle back on this, it would help to know which you are asking about.

Best,
Laurie
 

Manhattanite

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After diagnosis, my PALS researched the assisted suicide options and he mentioned to friends in Vermont that he might want to travel there to seek assistance. He never acted on it though.

This spring when he could no longer leave the apartment, eat, speak, etc. he emailed me and my sister-in-law several times saying he wanted to die because he felt he could no longer do all the things that brought him joy in life. He also communicated this to the hospice nurse almost every time she visited.

At that point I felt that he had the option of saying, "no more ventilator, no more feedings through the PEG, etc. I want nature to take its course and give me morphine so that I don't suffer." I debated internally whether or not to tell him that he had this option. But I came to the conclusion that he was capable of researching his options and if this is what he wanted then it would have to come from him, not me.
 

Atsugi

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This particular thread is different (to me) than other "assisted dying" threads.

My own personal opinion is that the PALS should get what they want, and the CALS should support the PALS without reserve. They can't even brush their own teeth, and they need us to respect them, to help them live life (and die) as they choose.

If and when it's my turn to make that hugely big decision, I hope nobody tells me "Well, I'm not going to help you, because I don't think you're thinking straight."

If I were a PALS, that would piss me off to no end. I would say: I'm an adult with my own knowledge, experiences, and opinions and now that ALS has taken away my independence, even my ability to come and go, now YOU who say you love me are going to tell me I can't have my final wish!?

I won't stick around to argue about this because it's not my business to argue how you want to support your PALS. But I will put my input here and let you decide for yourself how you want to handle it.
 

LizF

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I'm in Canada, Steele. When I was first diagnosed, it was in the same week that physician assisted death was being debated in the House of Commons.
I thought at that time that I was very glad to have that option, and thought I would definitely reach the stage where I would want to have that kind of death.

I've realized that for me, it's about control. With ALS, we only know the end result, and not how long it's going to take, or how much we can stand before the end. So having the control to at least make that decision has brought me peace of mind. Such peace of mind that now I rarely think of it, just knowing it's an option makes me feel better, and I've gone on to live a much more rewarding life than I thought possible!

But of course, we are all different. I do think your Dad should be aware of it, and discuss it with his physician if he chooses. Ultimately, it's his decision. There is, if you are unaware, a 2 week "cooling off" period between the time a request to die is made to the doctor and the date it's carried out, so a patient can't really make a rash decision and can easily change their mind.
It IS terrible and sad. His life is only as good as he feels it is, not what anyone else does. And no doubt that's incredibly difficult, as a loving child, to deal with. You have my heartfelt sympathy.

All the best with your Dad,
Liz
 

Steele

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Thanks for the replies everyone and sorry i wasn't particularly clear in my post. Dad is still newly diagnosed and can still walk and talk and eat although all of that is fading fast. His breathing is laboured but he doesnt use his bipap as much as he should. He refused peg. (Doesnt see why he'd need one if he's still able to eat right now. He says he just going to down 6-8 Ensure/day instead of a feeding tube). He wont consider a walker or scooter or wheelchair. Overall, he still doesnt fully understand/accept what ALS is (he asked me the other day what i thought was causing his breathing problems. I told him ALS - his lungs are fine but the muscles surrounding them are losing the ability to make the lungs work... he seemed disappointed in this explanation, even though the entire disease has been explained to him many times). He's miserable because to him, if things stay the way they are, life isnt worth living. But this is as good as it will ever be for him! Especially if he wont accept the helpful interventions. How will he feel when he cant speak? Or walk or eat? He's completely stubborn and would rather suffer than accept help. He's not one to make the most of every day, mostly because he mever really did beforehand. He's never had hobbies or liked to read, only me and his gf for family... he just watches tv now and naps. Refuses all outings except going on a drive (his gf drives) He doesnt seem to get anything from watching my 3.5 year old son play and giggle. I know he's depressed. A huge part of this is also just who he is as a person though.

Anyway, i agree that it would completely be his choice and i would certainly do what i needed to do to help him in any way i could, either way. I struggle with the idea of telling him its an option because it feels like he still thinks theres hope for recovery for him. It feels like it would be sucking the hope right out of him.. like telling him 'I think you should just die now' which is totally not what I'm getting at... same as when he declined the peg, none of us were willing to say straight up: 'soon you wont be able to eat and you will likely choke and aspirate and get pneumonia and your body will likely not be able to recover from that' (it has been explained to him in a roundabout way but never in definitive terms... i wonder now if thats what he needs. I question my actions that day all the time.. hence this current situation)

I honestly don't know how PALS get this diagnosis and still manage to live life with a smile in their eyes... it seems like so many of you on here are doing that and i am humbled. Thanks for reading if you stuck to the end of my emotional ramble. This is all so very hard. You're all doing a really good job.
 

KarenNWendyn

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I agree your dad sounds depressed. Given that you're probably never going to change his basic nature, this is going to be a tough road. I think antidepressants would be helpful for him, but he probably will refuse. Education is also extremely helpful. It would be great if he could get on this site and just read through some of the threads. A social worker could be helpful as well, especially if connected to the ALS association. I'm not sure if taking him to a support group would help-- you'd probably have to drag him there, and that's never productive.
Educating yourself is the next best thing, and it sounds as if you are doing that. Best luck to you and your dad.
Karen
 

Dave K

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It is natural for a PALS to have thoughts about control over when they die. Living with ALS can create fear about what may happen as it gets worse. However, many PALS find an unexpected ability to adapt to the challenges ahead, and their views can change over time. (On this forum one can find instances of PALS reporting they have made a “final” decision to refuse a PEG or ventilator, only to continue writing posts after receiving those treatments.) This has been compared to being in a “revolving door” of end of life decisions. Consequently, it can be very difficult for a CALS to know when a decision is truly final.

It is generally recommended that every PALS should be reassured that, with the right care, dying can be managed to ensure a dignified and peaceful death. Most people have a more gentle death than they may imagine, but the progression of the disease can feel overwhelming.

Often extreme feelings are due to the wider pressures the disease can create and through fear of becoming a burden to others. With the right support, many problems can be solved or reduced to help the PALS and those close to them to achieve a better quality of life. This may help the PALS to feel calmer and consider a range of ways to manage the demands of the disease. If suggestions or solutions to these concerns can be provided, thoughts of suicide may subside. Discussion is therefore crucial in order to explore and understand these issues and concerns.

Unless people are going “public” with their end of life decisions, there is little reason to worry about things like legal authorities interfering with those decisions. But if legality is a concern, it is best to consult a local lawyer with health care expertise. IN GENERAL (although laws may vary from place to place), in most places it is legal for someone to:
- take their own life
- refuse life-sustaining treatments. This is not assisted dying.
But in it is not legal for someone else to:
- encourage another person towards suicide (including advising them how to do this)
- assist them with their suicide.

Medication cannot be used with the aim of hastening death, but it may be provided as part of a package of palliative care to reduce pain and other symptoms at end of life. There have been cases where such medication was administered “preemptively” before invasive ventilation was withdrawn at the patient’s request.

In some places, a physician may prescribe drugs that a terminally ill patient may self-administer with the specific purpose of hastening death, and in these jurisdictions this is not considered “suicide” when certain conditions are met. One of those conditions is that the patient must be fully informed about their prognosis and palliative and hospice care options. If the patient is fully informed about these things, the prescription is not assisting suicide and is therefore lawful. If the patient is not fully informed, then it is assisting suicide and is unlawful. Consequently, if legality is a concern, it is extremely important for the patient to be fully informed about their palliative care alternatives to a life-ending prescription. Therefore, when PALS and CALS have these discussions, it is important to explore alternative ways to solve the issues, so that the PALS can make an informed choice about any next steps.

A PALS can influence how their care will be managed in the later stages by using advance care planning. They can (and should) record advance decisions to refuse or withdraw treatment, in the event they become unable to make or communicate these decisions for themselves.
 

lgelb

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It seems counterproductive to say:

But in it is [sic] not legal for someone else to:
- encourage another person towards suicide (including advising them how to do this)
- assist them with their suicide.


"Suicide" begs a meaningless legality question. As you point out, Dave, no one's going to be prosecuted who flies under the radar. Morphine that is titrated to comfort with knowledge that the dosage may hasten death is NOT suicide, nor assisting suicide. It is the doctrine of the double effect.

As you go on to say, correctly:

Medication cannot be [legally] used with the [primary] aim of hastening death, but it may be provided as part of a package of palliative care to reduce pain and other symptoms at end of life.

Let us be clear, as many people here read these posts and don't ask questions, though of course PMs are also possible. "Morphine that comforts and also hastens death" is a very common request/response in ALS.

Best,
Laurie
 
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Dave K

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It seems counterproductive to say:

But in it is [sic] not legal for someone else to:
- encourage another person towards suicide (including advising them how to do this)
- assist them with their suicide.


The text you call "counterproductive" is merely the verbatim summary of the applicable law as set forth in the MND Association's "a-professional-guide-to-end-of-life-care-in-mnd" as well as the "end-of-life-guide for people with motor neurons disease." I believe the summary is a fair and accurate description of the current law in most places, including probably the poster's locale. As indicated, local laws may vary.

As for your opinion that sharing this summary of the law is "counterproductive," we should sit down sometime and have a chat about the value and meaning of "productivity."
 

Atsugi

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"As for your opinion that sharing this summary of the law is "counterproductive," we should sit down sometime and have a chat about the value and meaning of "productivity.""

When a loved one smiles and says "thank you," I think that's as productive as it gets.

It's important for people to understand that morphine may legally and ethically be administered to ease the patient's suffering, even if the dosage goes beyond the fatal level.

It is not suicide when an incurable disease is killing you and you opt out of the suffering and anxiety by managing the timing and manner of your death. It is managing the end of your life sensibly.
 

lgelb

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[From Mike> Ooops. Sorry, Laurie. I screwed up. Didn't mean to delete your post.]

[v2 edit after deletion] Basically, I said that I wasn't afraid of discussing morphine, obviously, which I do a lot, but of focusing on the letter of the law instead of reality, which could cause unnecessary suffering. We've heard from a lot of scared CALS on this.

So to be clear, we have never heard of any CALS prosecuted for titrating morphine to comfort, whatever the secondary consequences.

[Mike: You're right, Laurie. I'm sure we agree on these matters.]
 
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Steele

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Thank you all for your input and advice. I have spoken to our ALS Clinic and the administrator actually had some great insight into it all, as she had just been through this with her grandfather (not diagnosed with ALS). She also had a doctor send out a package of information about the MAID program (Medical Assistance in Dying), so I will educate myself on all that before deciding what to do. First step is probably to suggest antidepressants to him though. Thanks again everyone.
 

Tedstehr

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Unfortunately, it seems that Physician Assisted Dying in Canada is not as clear cut as hoped. The patient must be within imminent death, must be able to express the wish to die, and be able to find a physician who will help. As we know, imminent death is not clear with ALS and that it may be difficult to communicate with someone who has lost the ability to speak and write. And I just heard about physicians in BC who are opting out of PAD because they are not compensated fairly for all of the extra things they must do before aiding a patient. Let's hope this can be sorted out.
 
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