Assisted suicide

[happylife]

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[Carebear]

Medically assisted death is not a option unless you have a condition or illness that is going to end your life.  You need to be terminally ill.

This topic hit a nerve for me because I have a very close friend whose spouse is in extreme pain (has been for several years) and also many other health issues that affect her quality of life.  She insists she wants to die via euthanasia although she in no way has a terminal illness.  We all see that she is severely depressed.

I think we need to understand that suicidal thoughts are completely different from medically assisted death.

If anyone is feeling this way, please talk to a medical professional and get help.  Help for pain, help for suicidal thoughts..get help.

And yes,  I have had debilitating pain for years.  And I understand how it can wear you down physically and mentally and emotionally.  So like many here,  I know all about this from personal experience.

There.  I'll get off my soapbox.  Sorry everyone.   This is a very personal issue for me for other reasons too.

[Linda196]

This is a highly controversial and emotionally charged issue.

Please stay aware that the poll is asking only for a personal opinion and reaction, and only personal reflections will be acceptable for replies.

This is not the place to debate the legal, ethical or moral ramifications, and I thank Carebear for stating her personal thoughts and suggestions (very valuable as they pertain to the seeking of help) within those constraints.

[Confused]

What on earth brought on this question?

[Maria3667]

Yes, I agree with above posters; it's a controversial, touchy subject. But I can understand why HappyLife wants to investigate this matter seeing as Sjogren's can have far reaching effects on physical and mental health & the fact there is no cure in the foreseeable future...

[vrystaat]

Consider the patient with SS, that is > 10 years of suffering.
Amongst patients the late stage of SS can lead to the following:

> Feeling sick & very fatigued all the time
> Pain from lumbar region (disc protrusion and arthritis)
> Pain from the gut and pancreatitis, Also stomach ulcers
> Pain from Demyelinating small bowel diseases
> Painful peripheral neuritis and Polymyositis
> Headaches
> Exhaustion  with extreme fatigue
> Pain from Microscopic colitis
> Pain from Trigeminal Neuralgia
> Dry eyes and mouth.
> There is no cure for SS

There are many others.
After many painful years, patients can lose hope. Some may consider suicide.
In this case, a mental health practitioner is needed.

[Sharon]

I definitely understand where this question is coming from
and the despair- both physical and emotional- brought on by this illness.
However, it is important to keep in mind that there is much research being done NOW to
find a treatment for SS and its symptoms.
Check out this site to see what's going on and to perhaps even enroll in a clinical trial yourself:
https://clinicaltrials.gov/ct2/results?term=Sjogren&recrs=b&recrs=a&recrs=f&recrs=d&recrs=m&age_v=&gndr=&type=&rslt=&Search=Apply

Results of the Abatacept (Orencia) study (Stage 3) should be available next year very possibly making Abatacept the 1st systemic treatment on-label for Sjogren's! 

[happylife]

I have done a lot of research based on pubmed articles. Here are my observations.

1. Only 20% patients have sicca symptoms only. These are the lucky lot.
2. 75% have normal sjogren, 25% have neuro sjogren
3. 90% of normal sjogren are ssa or ssb or ana positive.
4. Only 20% of neuro sjogren are ssa or ssb or ana positive.
5. Neuro sjogren is more aggressive  than normal sjogren
6. 25% of neuro sjogren patients develop trigeminal neuralgia. This pain is the worst pain known to the medical world. It is more painful than limb amputation pain of an accident. 25% of these patients commit suicide. MVD surgery gives hope, but that does not apply to trigeminal neuralgia caused in neuro sjogren.
7. Debilitating diseases of sjogren : joints pain, fatigue, insomnia, peripheral neuropathy are very common.
8. Unbearable suicidal diseases : trigeminal neuralgia, throat neuralgia, multiple sclerosis.
9. Quality of life impacting diseases : dry eyes, dry mouth, dry skin, dry nose, dRTA, Hepatitis, liver cirrhosis.
10. 50% of sjogren patients will develop one or more additional autoimmune diseases.

My take away from all these research is each sjogren patient develops atleast 20 to 40 diseases in their life time. Most of them cannot work. Suffer on a daily basis. Significant medical expenses and hospitalization. Heavy financial and psychological burden on their family.

When i am healthy and happy i surely wanted to live for an eternity. But with sjogren i want live as long as the pain to me and my family is bearable.

Right to live is a fundamental right, so is the right to die in my view.

That being said, i guess we need to have the assisted suicide options *information* available to the needy chronic incurable diseased patients.

[markt]

I too understand the mental and physical burden...

Having a chronic autoimmune disease is much like being a Prisoner of War... your are home, but not quite home, and waging a battle in your own mind and body to stay ahead of symptoms that are not quite tangible to those around you.  Everything is twice as hard, and you are guaranteed to face it every day.  But there are good days too, and that's what we live for.

That said... I have found help and interventions that have brought normalcy to my life, even on bad days, and I do believe that they can help others.

On the hope front... I look forward to having my "sentence" commuted early with a therapy more tailored for Sjogrens than Rituximab.

https://www.novartis.com/stories/patient-perspectives/targeting-roots-sjogrens-syndrome

Beyond that, I am in a trial right now for Lacriprep, another first in class protein therapy for Sjogrens Dry Eye.... 

Lots of "things" are coming to fruition that mean better days for folks that are going through this challenge.

[Joe S.]

For me, because of my beliefs, suicide is not an option. During my deepest depression and most intense and lingering pain, the thought does cross my mind. After reading books on "Life After Life", stories of people that have been revived, I know intellectually that it is not the option some believe it to be. Depression can be managed with CBT. Pain can be managed with breathing and meditation. Yes, for a lot of people, medications can help both situations. I have bad reactions to so many of these medications I had to find alternatives. Often where individuals take ownership and participate in the management of their symptoms they have much better results than those that passively expect others to take care of them. Ask for help when you are having problems. Do what you can as you can to help yourself. Always remember to breathe as long as you live. An like Norman Cousins suggests, laugh often and treat disease with a large dose of humor.

[Pete0211]

When I went through my "heck week" of initial symptom onset (10 days of no food, no sleep, and continued "we cannot do anything" from doctor/ER visits), I was seriously weighing suicide - and that was just the dryness of my mouth/throat/sinuses.

I had gone through some extreme things in the past (Markt might be able to relate to SERE training, as an example), but I never felt as hopeless as I had during this 10 day period.

Getting the proper treatment definitely changed my mind on that - just the 90 minutes of sleep I got that first night made a huge difference in my outlook.

Pete

[Sharon]

Markt- Do you know when the CFZ533 may be made available to the general public?
The Phase 2 study was supposed to have been completed August 27, 2018.

[markt]

Hi Sharon,

Have to be honest, I do not know... something like 3-5 years.  Depends on a lot...

I do see this being a prime scenario for the FDA Expanded Access program here in the States though.  Sadly, few Rheumatology practices have the bandwidth or inclination to put together a package on behalf of their patients and submit to the FDA.

Large Public practices that have a board (with multiple providers), or their own Institutional Review Board (IRB) and even less likely to go this road, as the decision to administer investigational drugs at their practice is a joint decision requiring everyone's buy-in (i.e. higher chances of folks not wanting to get involved. (Doesn't mean it can't happen though).   

Regarding the medication...lots of data, and a good idea that is generally safe.  It's being concurrently trialed in RA, SLE, and Solid Organ transplant.  Not sure if these other trials are further ahead (closer to the FDA Approval/licensing finish line) than the Sjogrens trials at present.

[bluegardenia]

6. 25% of neuro sjogren patients develop trigeminal neuralgia. This pain is the worst pain known to the medical world. It is more painful than limb amputation pain of an accident. 25% of these patients commit suicide. MVD surgery gives hope, but that does not apply to trigeminal neuralgia caused in neuro sjogren.

hi happylife: I read that just in United States there  are 4 millions people with sjogren. Just in the United States.  Plus some millions  around the world
so 25%,  if your data are exact, more or less  one million people have trigeminal neuralgia in USA and more or less 250.000 commits suicide???
this seems very strange to me, odd that media do not speak about this!!!

[Sharon]

Markt- I see it's being trialed for MG as well. We'll have to wait and see which AI reaches the finish line first.

bluegardenia- I agree with your thoughts on this.