This woman with [fibromyalgia] wants to end her life, but can't get assisted death

[rvallee]

(Be warned: difficult topic)


Discussion in Canadian media over assisted suicide of a fibromyalgia patient. From her own words it appears she does not want to die but wants to communicate the fact that the status quo is so bad it leaves her no choice unless options change. Familiar theme, unfortunately.

Assisted suicide is strict and limited, enacted by provinces. As it should be, but the lack of any meaningful support and research essentially creates impossible circumstances for some. This is a similar debate to what is happening in... Sweden? Where the same right is being discussed and the same platitudes offered in response.

An Ontario woman is sharing her story of living with an incurable disorder to help explain why she and others want the federal government to make medically assisted death easier to access.

Justine Noel wants to see the law changed so she can legally end her life. Fibromyalgia has left her bedridden for most of the day, as something as simple as standing up can cause her significant pain. It is not fatal, but it is resistant to treatment. It's also "unbearable," she told CTV News.

"Every single doctor you go to, you're told there is no cure, there's barely a treatment, you're not going to get any better, you just have to learn to live with it – and some people can't learn to live with it," the 27-year-old woman said in an interview at her townhouse in Niagara Falls, Ont.

Noel has applied for assisted death twice, but was turned down both times. Ontario's laws require not only intolerable suffering, but also a foreseeable death in order for assisted death to be granted.

https://www.ctvnews.ca/health/this-...r-life-but-can-t-get-assisted-death-1.4720730

 

[shak8]

So sad...and at age 27.

I question whether a very talented anaesthesia-pain doc might help her enough for her to question her decision--IV sedation by visiting nurses (expensive) because

some of the symptoms can change and lessen as time passes; perhaps there is some adaptation within the pain system.

It is just hard for me to comprehend this this morning.

 

[InitialConditions]

"without any real biological source"....

why can't reporters get this right. "without any known biological source" is infinitely better.

 

[shak8]

I just can't accept that there is no medical/surgical help for her. I need find out whether she has tried an intrathecal (spinal) device. This, as far I know, is still used for intractable pain and give the patient opioid type drugs or any other useful substances directly into the central nervous system.

If this hasn't been offered, or if she has refused it, I have to find out.

https://www.upmc.com/Services/neurosurgery/spine/treatment/pain-management/intrathecal-pump

Edits:

https://www.ncbi.nlm.nih.gov/pubmed/26307558

I have contacted the medical reporter of the above for Justine's contact info.

Probably all that can be done in the Canadian health care system has been done (but I don't know and can't easily let go of this...the nurse in me awoke).

 

[Joeblow604]

I just can't accept that there is no medical/surgical help for her. I need find out whether she has tried an intrathecal (spinal) device. This, as far I know, is still used for intractable pain and give the patient opioid type drugs or any other useful substances directly into the central nervous system.

If this hasn't been offered, or if she has refused it, I have to find out.

https://www.upmc.com/Services/neurosurgery/spine/treatment/pain-management/intrathecal-pump

Edits:

https://www.ncbi.nlm.nih.gov/pubmed/26307558

I have contacted the medical reporter of the above for Justine's contact info.

Probably all that can be done in the Canadian health care system has been done (but I don't know and can't easily let go of this...the nurse in me awoke).

The problem in the Canadian medical system is often a Fibro Dx means they don't want to look further or deal with you anymore. Many doctors still don't accept ME and give a fibro Dx in its place. An ME Dx also means they don't want to look further or deal with you anymore. Being a public system we can't doctor shop much other than a new gp. And a shortage of them in many places. We are at the mercy of your GP to make a referral to a specialist. MRI can be a year or 2 wait if you can even get one. I've got a new symptom recently, lump on my neck and a horrible ring in my head and asked GP for a CT scan but his answer was Nope. He just chalks it up to ME, a disease he doesn't even know, and send me home untreated. Its not easy to get help in our system. Some people get lucky and navigate the system better but most do not.

 

[Guest 2176]

I think it's entirely reasonable to have assisted suicide available for terrible, incurable conditions. And affordable. Not flying all the way to Switzerland after a lengthy application process...

I do not love the idea of a super clinical setting for my death, but if it was the only way to spare family a mess and some legal culpability I would strongly consider it.

So we are not allowed even palliative care and then we have to beg for death? The amount of rage this situation inspires in me is immeasurable.

There is little chance that I or anyone else will be fully cured anytime soon.

 

[svetoslav80]

I think it's entirely reasonable to have assisted suicide available for terrible, incurable conditions.

The question is who judges which condition is terrible and incurable. A doctor? Then what happens if the patient wants to end their life because of some unrecognized condition (like CFS). I find it humiliating that somebody decides for you if you have a right to end your own life. Everybody should decide for theireselves.

 

[Perrier]

The problem in the Canadian medical system is often a Fibro Dx means they don't want to look further or deal with you anymore. Many doctors still don't accept ME and give a fibro Dx in its place. An ME Dx also means they don't want to look further or deal with you anymore. Being a public system we can't doctor shop much other than a new gp. And a shortage of them in many places. We are at the mercy of your GP to make a referral to a specialist. MRI can be a year or 2 wait if you can even get one. I've got a new symptom recently, lump on my neck and a horrible ring in my head and asked GP for a CT scan but his answer was Nope. He just chalks it up to ME, a disease he doesn't even know, and send me home untreated. Its not easy to get help in our system. Some people get lucky and navigate the system better but most do not.

Yes, dear Joe, you describe the hell of the Canadian system very well. Thanks. We have no help at all. When absolutely necessary, we use a private clinic and pay cash because it means not waiting in the waiting room for hours. One has to live in Canada and see this system at work to really appreciate how miserable it is.

 

[Perrier]

I think it's entirely reasonable to have assisted suicide available for terrible, incurable conditions. And affordable. Not flying all the way to Switzerland after a lengthy application process...

I do not love the idea of a super clinical setting for my death, but if it was the only way to spare family a mess and some legal culpability I would strongly consider it.

So we are not allowed even palliative care and then we have to beg for death? The amount of rage this situation inspires in me is immeasurable.

There is little chance that I or anyone else will be fully cured anytime soon.

Dear Debored, I entirely understand your statements. They are shared by our family member. I am utterly outraged that no treatment to deal with the most miserable symptoms of this illness have not been found. Prisoners when they will be released, but the severely ill do not. You are a fine writer and I suggest you scribble things down in a notebook, if you don't already.