Email comment: "V interesting reading the MS-Selfie article on suicide. Not surprised you got such a reaction. I did notice that one of the eight deaths across the fenebrutinib two trials was from suicide... all v sad."
Email: "There are few horrors to match the loss of physical ability, agency, and autonomy. I was Dx'ed with MS in 2020. Steady declines since then. Absolutely agree that each person has the right to determine their manner and means of living and dying. Appreciate these two articles very much! More to ponder; this conversation is essential. Thanks."
This is a great summary of the comments / discussion.
“He argues that treating this as a mental health issue is merely a “smokescreen” and an “excuse to dish out a pill”.
The point I was trying to make is a follows:
I have no doubt that some people have mental health issues prior to an MS diagnosis and others develop mental health issues after diagnosis (either because of biological changes caused by the disease, or the stress etc. from what the disease does). However, the reality is that neuros (at this point in time) do not treat the underlying real MS / smouldering MS / neurodegeneration. Rather, each symptom is treated - physio / mobility aids, anti-spasticity drugs, patch over eye, AFO for foot drop, catheter, sleeping pill, anti-depressant…. None of these impact the unrelenting disability progression ie the climb up the EDSS (either quickly or slowly).
A key issue relating to suicide is ‘hope’. The hope that one day treatments to stop progression / increasing disability will become available. This stability would allow a patient to plan for the future / retain their job / continue the activities they enjoy. Until such treatments are available, “some” patients get to a point where there is no more joy in life and there is no hope that anything will change for the better. A treatment to prevent further deterioration will result in a huge fall in the number of MSers thinking about suicide, or going through with it.
Comment from the US: I want this as an option, and more and more states are legalizing it but there is much resistance from right-to-life movements. Anyway, aside from the legalization issue, it needs to be a practical solution. There are so few providers who will actually assist you, that, even after legalization, it does not seem to be practically usable.
Most of the state laws require having a terminal condition where you will pass in the next six months, I believe that seems rather restrictive.
actually, a greater concern for me as dementia runs in my family is the ability to have assisted suicide if I have dementia, but there’s the Catch-22 of not being able to if not mentally capable to make that decision. Efforts to set up dementia based care plans where you say if I am demented I want this are legally and ethically fraught- am I truly consenting, etc.
My friend’s dad has had dementia for ten years. He is in a care facility and doesn’t recognise any of his family. He is incontinent and increasingly violent. This man was a professional footballer and he wouldn’t have wanted to have lived like this. He’s pumped full of antibiotics and drugs to try and calm him down. We wouldn’t treat animals like this.
I have the same issue. Anyone who spends time with love ones suffering from dementia in care facilities realize they want a plan b. I do no want to be there, suffering. Just like end stage MS. Same idea of a care facility, low quality of life and burdens in terms of cost and family support. No thank you
I’m with you on this. My father begged me not to “ put me in a home”. He had Alzheimer’s and dementia, as did his mother and sister. His mother was in care, in the days where the residents had communal sleeping areas. There was no choice for dad, he was aggressive and neither myself or mum could help him beyond a point.
The nursing home was “ ok”. There were many short comings despite the cost. Then Covid hit the home and he had a painful lonely death. The cost was around £1500 a week. With basic end of life care. Not even the medication for pain. We may never have that Covid scenario again, but my trust in private costly care is minimal. I know I’d step out of this world through my choice, I saw my sister die through complications (MS), another lonely death. Unfortunately just 3 weeks after dad. Our experiences form our thoughts and decisions.
When my dad became severely disabled with MS he’d lost the use of everything including speech I recall him saying he really wanted to end his life but wouldn’t do it to my younger half brother as his mother died by suicide . He died naturally at 56 from aspiration pneumonia . As someone with SPMS and my sister has PPMS we are both in our mid 50s and ambulatory wheelchair users we have both seen the worst of MS and are fully aware of the potential outcome . At this stage I couldn’t comprehend ending my life, despite the limitations I still love it . I’ve never considered myself depressed but possibly the 120mg of Duloxatine I take daily for neuropathy helps - who knows . I’m also a glass half full person and I thank my lucky stars everyday that MS isn’t like MND. Of course like most I really hope one day there will be a cure so hope also exists.
"I thank my lucky stars everyday that MS isn’t like MND". I get that SO much. I know it CAN be, but usually isn't. With MS you at least have a chance of not ending like that. So I will say, having watched my mother die from the bulbar form of MND (still ALS over here) I was relieved to the point of giddiness at my dx of MS, rather than that. And isn't that pitiful?
Not pitiful at all , when I was diagnosed I was so sick and dizzy , uncoordinated, speech slurring , that even having experienced MS with my dad, and having been reassured many years before by a neurologist that my symptoms were not MS , it wasn’t on my radar . Dr google said I likely had a brain tumour and I was petrified, so the relief I felt when 4 hours after my MRI I was told it was MS and it looked like I’d had it for many years. I think the neurologist was taken aback with my reaction 😆Sometimes having seen people suffer worse fates helps us manage our own perspectives and gives us the resilience to deal with our own problems and also prevents us wallowing in the why me that can come with a diagnosis like MS.
MS care: “Embedded mental health professionals: At a systemic level, it should be a minimum standard—not a luxury—to have a clinical psychologist or neuropsychologist embedded directly within the MS care service.” Gavin I wholeheartedly agree with you! This should be a minimum standard! I have had severe depression and thanks to medication and a psychologist (I paid privately for - I appreciate I was lucky to be able to afford it) I found my way back. Mental health is still not adequately addressed in healthcare. My Wishlist for an MS team would also include occupational therapy (admit slight bias as I’m an OT), speech language therapy, neuro physiotherapy, specialist nurse and a social worker. Thank you again Gavin so wholeheartedly appreciate your posts.
I’m sure everyone on this site is fully aware of the different between suicide and assisted dying, but I get concerned and often annoyed at the ways in which the two are so closely associated that they are viewed as one and the same.
I have lost family and friends to suicide and see no correlation between their desperately sad and lonely deaths and my decision to sign up to a centre for assisted dying. This was an informed decision that centres on my need for independence and autonomy in how I live my life. Every person can exercise these rights in different aspects from early childhood onwards, until that is you become increasingly physically and/or mentally impaired, and this is something I’m aiming to avoid to the best of my ability - for example I also have in place a DNR form, alongside a Living Will and Advance Directive. Very importantly family and family are aware of my wishes - in fact I don’t want to call them wishes - they are requirements!
I am not sure we are associating the two issues. This newsletter clearly separates them as two different problems, which was the point of the second newsletter.
I think this is an important distinction. Agree we are conflating two issues, each which deserves its own discussion.
1) MS can affect mental health and it absolutely needs to be addressed.
2) Assisted dying as a "what if" plan, is a valid and rational choice for many and as you said a different issue entirely.
I think every ms neuro should know their patients views regarding assisted dying, it's very much an individual response. Perhaps it does not need to be raised until the patient is on dmd and stable but it should be standard and may inform DMD choices
I am not sure we are conflating the two issues. This newsletter clearly separates them as two different problems, which was the point of the second newsletter.
That's fair. I meant more the global "we". I think this group understands the distinction. I do not see that distinction in culture when discussing the ms issues ms brings, or the validation of assisted dying as something separate from that idea that is common for people with ms to think about and not a sign of mental illness but a rationale response whether you agree with it or not
I can't love this enough. Finally, a thoughtful discussion of the very real distinction between logical, non-mental illness-related suicidal ideation and clinical depression-driven ideation. I understand and respect the fears generated by the involvement of physicians and government legislation to the ending of life. Those fears are hardly trivial, and need to be part of the discussion/solution.
I'm going to be really honest. By the time assisted dying for MS sufferers is passed as law in th UK it could be 15 - 20 years into the future. Therefore I reseasearched the logistics and options currently open to me. There is basically 1 currentl option. When you realise you are researching ways to end your life it is very sobering. I am only 50.
I still have hope and read prolificly. Every time I read a new article I feel that hope only for it to be subsequently dashed months or years later. I have PPMS and as only around 10% of MS parients have this sub type I do feel like generally we are forgotten about. Drug compaies are not going to spend millions of pounds when clinical trials for ppms are more expensive,, more likely to fail and have a smaller potential market.
I've spent years battling with Suicidal Ideation. Psychiatrist's don't like it when you say "I've thought about it, but I would never do it" My protective factors were my children. I knew I couldn't do that to them.
When my sister succeeded in ending her own life, almost 10 years ago, I was relieved that she was no longer struggling with the constant onslaught of depression and anxiety. However there is also sadness that she wasn't around to see her son get married, become a father, and actually just to see him change from the child that she perceived was not living up to her expectations into an adult who most definitely would. There is a narrative in my head that "If she had only been able to wait a little longer....."
My MS is not my biggest problem. The persistent pain and not being able to walk very far following my knee replacement 5 months ago is worse. I can't walk at all without a crutch. Prior to my knee going wrong, I could walk a couple of miles unaided. I am now facing a hip replacement on the other leg to the knee in the next 6 weeks, before it gets any worse as the operation is already going up to be a challenge for the surgeon. My thoughts have turned to "I can't do this" but I know there is no logical course of action that comes ftom this thought. It has not become suicidal ideation but I don't know why, except that my underlying depressive episodes and general anxiety disorder are well controlled by medication. Maybe this gives me the mental "space" to cope with my current physical condition.
I watched my Mum's life become more and more limited and she spent her last few years in bed at her nursing home due to a combination of dementia and physical limitations. I know, at the moment, that is not what I want for me. However I also know that she was happy in her own world. She was in no hurry to leave this world. She spent a week in hospital, diagnised with heart failure, drifting in and out of consciousness, not eating, having seizures and we had the palliative care conversation. Then she was returned to the Nursing Home at our request, on blue lights to minimise the chance of her dying in the ambulance. The next day she woke up and asked what was for breakfast and lived for another 6 months! Maybe from her perspective her life wasnt as bad as it looked to me.
Unless you have experienced the gradual loss of many of your body functions you will have little idea of what it feels like mentally or physically to know what outcome will be. Only we can rationalise ending it with continuing living a life that’s not really a life for many of us PWMS. My life was no longer a life the day I was diagnosed. This is scary for me to read but I would be lying if I said the thought has never crossed my mind as I often find myself thinking about it for example Dignitas and cost of, bravery and more. Unless you are in this one way tunnel none of it makes sense. It’s all about bravery IMHO
Thank you for acknowledging rational suicide. It's one of the totally taboo topics and I certainly won't discuss this with doctors, lest they get bad ideas... There is most definitely a point at which I would (will?) go that route, I can't quite say where it is but almost certainly before I am bed ridden.
As for the elephant in the room: As a Swiss, who has always been strongly in favor of MAID, I've yet to hear of a credible case of a patient being pressured by medical staff , no matter how much opponents like to trot out the argument. You would expect those cases to make the news in a country with a liberal regime... If anything, the incentives in the system are to prolong life and suffering unnecessarily. Having said that, some of the organizations in the space *are* shady. And there might be the odd family member with less scruples.
Dignitas itself has a bunch of issues (sketchy books, reportedly getting debanked which usually happens for a reason), even so, probably still a more legit outfit than the newer, smaller competitors.
Exit (not to be confused with Exit International which is very questionable), usually considered gold standard, to my knowledge only serves domestic patients which solves a bunch of thorny issues.
This is a massive topic but one that does need addressing. I now wish I could relocate an item on MS News in which a person with MS says she is going to focus on her mental health, stating something like good mental health is the foundation for her dealing with MS and all the challenges it brings.
I am thinking that there must be a lot to learn from the Cancer community and I’ve just read a few bits about suicide among cancer patients is several times higher than in the general population and that at some point many patients do suffer from depression and anxiety and think about suicide. Something I picked up from reading around the topic of addressing mental health and suicide ideation in patients is the importance of finding out if the patient has any past history of depression, anxiety , self harm or suicidal experiences
Maybe there is a need for a wider discussion sharing ideas and suggestions about mental health, suicide and suicide ideation in people with life limiting and life changing conditions.
I do think that a kindly face and kindly non judgemental attitude from MS staff could make a massive difference to any MS patient who is struggling with depression, anxiety and any thoughts of suicide.
It’s 19 years since I was diagnosed and I can’t fully remember how I felt at the time but yeah, maybe some gentle , possibly indirect words about how the health profession recognises that the diagnosis is a lot to take in ( to face) ,that I will be worried for me and my family and then something vague about helping me/ guiding me through any mental and emotional journey of coming to terms with the diagnosis and seeing beyond it
Did not know that statistic re cancer. Metastatic can affect the brain. I do know there is a lot of life planning now, which certainly wasn’t the case 30 years ago. It was “5 years, you’re good”.
I fully intend to keep open the choice to end my life on my terms. I am a pwMS, but I doubt it will be MS that takes me down. Given my health arc it will probably be something cardiovascular. 😄
Just trying to discuss the suicide statistics around MS, and how an MS diagnosis fundamentally changes your perspective on who/what the enemy is, can end you up in many years of concerned mental health assessments at each visit. The person with MS would prefer to spend our short time together on their concerns, not your misdirected sense of obligation. Discussing the very real statistics is reasonable, not suicidal. I was interested on any perspective on how patients ended up in that place, and I still feel like that is the main concern at each appointment. I mentioned the S word.
Suicide as a rational decision v mental health issue!
From my point of view one year ago it was a very rational, thought out and organized decision. Luckily my wife contacted our GP and after a very difficult meeting the suicide crisis team visited us a number of times and I gradually came out of that hole. At the time though there was no point in trying to convince me otherwise, the best option for my wife and our children was for me to be out of the picture. For me it was about making the best decision I could which ultimately would make my family’s lives far easier with less anger from me.
I got to the point where I had made my choice and I was relieved that I could actually help my family in some way.
There’s a lot more to this story which would probably get a bit boring so I’ll stop there. It’s been very difficult and I am far better than I was but I can see why I thought the way I did.
I thought my decision was very rational but now I know that it was my mental health blurring the view.
Email comment: "V interesting reading the MS-Selfie article on suicide. Not surprised you got such a reaction. I did notice that one of the eight deaths across the fenebrutinib two trials was from suicide... all v sad."
Email: "There are few horrors to match the loss of physical ability, agency, and autonomy. I was Dx'ed with MS in 2020. Steady declines since then. Absolutely agree that each person has the right to determine their manner and means of living and dying. Appreciate these two articles very much! More to ponder; this conversation is essential. Thanks."
This is a great summary of the comments / discussion.
“He argues that treating this as a mental health issue is merely a “smokescreen” and an “excuse to dish out a pill”.
The point I was trying to make is a follows:
I have no doubt that some people have mental health issues prior to an MS diagnosis and others develop mental health issues after diagnosis (either because of biological changes caused by the disease, or the stress etc. from what the disease does). However, the reality is that neuros (at this point in time) do not treat the underlying real MS / smouldering MS / neurodegeneration. Rather, each symptom is treated - physio / mobility aids, anti-spasticity drugs, patch over eye, AFO for foot drop, catheter, sleeping pill, anti-depressant…. None of these impact the unrelenting disability progression ie the climb up the EDSS (either quickly or slowly).
A key issue relating to suicide is ‘hope’. The hope that one day treatments to stop progression / increasing disability will become available. This stability would allow a patient to plan for the future / retain their job / continue the activities they enjoy. Until such treatments are available, “some” patients get to a point where there is no more joy in life and there is no hope that anything will change for the better. A treatment to prevent further deterioration will result in a huge fall in the number of MSers thinking about suicide, or going through with it.
Comment from the US: I want this as an option, and more and more states are legalizing it but there is much resistance from right-to-life movements. Anyway, aside from the legalization issue, it needs to be a practical solution. There are so few providers who will actually assist you, that, even after legalization, it does not seem to be practically usable.
Most of the state laws require having a terminal condition where you will pass in the next six months, I believe that seems rather restrictive.
actually, a greater concern for me as dementia runs in my family is the ability to have assisted suicide if I have dementia, but there’s the Catch-22 of not being able to if not mentally capable to make that decision. Efforts to set up dementia based care plans where you say if I am demented I want this are legally and ethically fraught- am I truly consenting, etc.
I want the option for my MS at least.
My friend’s dad has had dementia for ten years. He is in a care facility and doesn’t recognise any of his family. He is incontinent and increasingly violent. This man was a professional footballer and he wouldn’t have wanted to have lived like this. He’s pumped full of antibiotics and drugs to try and calm him down. We wouldn’t treat animals like this.
I have the same issue. Anyone who spends time with love ones suffering from dementia in care facilities realize they want a plan b. I do no want to be there, suffering. Just like end stage MS. Same idea of a care facility, low quality of life and burdens in terms of cost and family support. No thank you
I’m with you on this. My father begged me not to “ put me in a home”. He had Alzheimer’s and dementia, as did his mother and sister. His mother was in care, in the days where the residents had communal sleeping areas. There was no choice for dad, he was aggressive and neither myself or mum could help him beyond a point.
The nursing home was “ ok”. There were many short comings despite the cost. Then Covid hit the home and he had a painful lonely death. The cost was around £1500 a week. With basic end of life care. Not even the medication for pain. We may never have that Covid scenario again, but my trust in private costly care is minimal. I know I’d step out of this world through my choice, I saw my sister die through complications (MS), another lonely death. Unfortunately just 3 weeks after dad. Our experiences form our thoughts and decisions.
States here - Is there anywhere other than Oregon? I don’t know.
https://deathwithdignity.org/states/
Thx, JR
When my dad became severely disabled with MS he’d lost the use of everything including speech I recall him saying he really wanted to end his life but wouldn’t do it to my younger half brother as his mother died by suicide . He died naturally at 56 from aspiration pneumonia . As someone with SPMS and my sister has PPMS we are both in our mid 50s and ambulatory wheelchair users we have both seen the worst of MS and are fully aware of the potential outcome . At this stage I couldn’t comprehend ending my life, despite the limitations I still love it . I’ve never considered myself depressed but possibly the 120mg of Duloxatine I take daily for neuropathy helps - who knows . I’m also a glass half full person and I thank my lucky stars everyday that MS isn’t like MND. Of course like most I really hope one day there will be a cure so hope also exists.
"I thank my lucky stars everyday that MS isn’t like MND". I get that SO much. I know it CAN be, but usually isn't. With MS you at least have a chance of not ending like that. So I will say, having watched my mother die from the bulbar form of MND (still ALS over here) I was relieved to the point of giddiness at my dx of MS, rather than that. And isn't that pitiful?
Yes! But I get it..
Not pitiful at all , when I was diagnosed I was so sick and dizzy , uncoordinated, speech slurring , that even having experienced MS with my dad, and having been reassured many years before by a neurologist that my symptoms were not MS , it wasn’t on my radar . Dr google said I likely had a brain tumour and I was petrified, so the relief I felt when 4 hours after my MRI I was told it was MS and it looked like I’d had it for many years. I think the neurologist was taken aback with my reaction 😆Sometimes having seen people suffer worse fates helps us manage our own perspectives and gives us the resilience to deal with our own problems and also prevents us wallowing in the why me that can come with a diagnosis like MS.
MS care: “Embedded mental health professionals: At a systemic level, it should be a minimum standard—not a luxury—to have a clinical psychologist or neuropsychologist embedded directly within the MS care service.” Gavin I wholeheartedly agree with you! This should be a minimum standard! I have had severe depression and thanks to medication and a psychologist (I paid privately for - I appreciate I was lucky to be able to afford it) I found my way back. Mental health is still not adequately addressed in healthcare. My Wishlist for an MS team would also include occupational therapy (admit slight bias as I’m an OT), speech language therapy, neuro physiotherapy, specialist nurse and a social worker. Thank you again Gavin so wholeheartedly appreciate your posts.
I’m sure everyone on this site is fully aware of the different between suicide and assisted dying, but I get concerned and often annoyed at the ways in which the two are so closely associated that they are viewed as one and the same.
I have lost family and friends to suicide and see no correlation between their desperately sad and lonely deaths and my decision to sign up to a centre for assisted dying. This was an informed decision that centres on my need for independence and autonomy in how I live my life. Every person can exercise these rights in different aspects from early childhood onwards, until that is you become increasingly physically and/or mentally impaired, and this is something I’m aiming to avoid to the best of my ability - for example I also have in place a DNR form, alongside a Living Will and Advance Directive. Very importantly family and family are aware of my wishes - in fact I don’t want to call them wishes - they are requirements!
I am not sure we are associating the two issues. This newsletter clearly separates them as two different problems, which was the point of the second newsletter.
I think this is an important distinction. Agree we are conflating two issues, each which deserves its own discussion.
1) MS can affect mental health and it absolutely needs to be addressed.
2) Assisted dying as a "what if" plan, is a valid and rational choice for many and as you said a different issue entirely.
I think every ms neuro should know their patients views regarding assisted dying, it's very much an individual response. Perhaps it does not need to be raised until the patient is on dmd and stable but it should be standard and may inform DMD choices
I am not sure we are conflating the two issues. This newsletter clearly separates them as two different problems, which was the point of the second newsletter.
That's fair. I meant more the global "we". I think this group understands the distinction. I do not see that distinction in culture when discussing the ms issues ms brings, or the validation of assisted dying as something separate from that idea that is common for people with ms to think about and not a sign of mental illness but a rationale response whether you agree with it or not
I can't love this enough. Finally, a thoughtful discussion of the very real distinction between logical, non-mental illness-related suicidal ideation and clinical depression-driven ideation. I understand and respect the fears generated by the involvement of physicians and government legislation to the ending of life. Those fears are hardly trivial, and need to be part of the discussion/solution.
I'm going to be really honest. By the time assisted dying for MS sufferers is passed as law in th UK it could be 15 - 20 years into the future. Therefore I reseasearched the logistics and options currently open to me. There is basically 1 currentl option. When you realise you are researching ways to end your life it is very sobering. I am only 50.
I still have hope and read prolificly. Every time I read a new article I feel that hope only for it to be subsequently dashed months or years later. I have PPMS and as only around 10% of MS parients have this sub type I do feel like generally we are forgotten about. Drug compaies are not going to spend millions of pounds when clinical trials for ppms are more expensive,, more likely to fail and have a smaller potential market.
I've spent years battling with Suicidal Ideation. Psychiatrist's don't like it when you say "I've thought about it, but I would never do it" My protective factors were my children. I knew I couldn't do that to them.
When my sister succeeded in ending her own life, almost 10 years ago, I was relieved that she was no longer struggling with the constant onslaught of depression and anxiety. However there is also sadness that she wasn't around to see her son get married, become a father, and actually just to see him change from the child that she perceived was not living up to her expectations into an adult who most definitely would. There is a narrative in my head that "If she had only been able to wait a little longer....."
My MS is not my biggest problem. The persistent pain and not being able to walk very far following my knee replacement 5 months ago is worse. I can't walk at all without a crutch. Prior to my knee going wrong, I could walk a couple of miles unaided. I am now facing a hip replacement on the other leg to the knee in the next 6 weeks, before it gets any worse as the operation is already going up to be a challenge for the surgeon. My thoughts have turned to "I can't do this" but I know there is no logical course of action that comes ftom this thought. It has not become suicidal ideation but I don't know why, except that my underlying depressive episodes and general anxiety disorder are well controlled by medication. Maybe this gives me the mental "space" to cope with my current physical condition.
I watched my Mum's life become more and more limited and she spent her last few years in bed at her nursing home due to a combination of dementia and physical limitations. I know, at the moment, that is not what I want for me. However I also know that she was happy in her own world. She was in no hurry to leave this world. She spent a week in hospital, diagnised with heart failure, drifting in and out of consciousness, not eating, having seizures and we had the palliative care conversation. Then she was returned to the Nursing Home at our request, on blue lights to minimise the chance of her dying in the ambulance. The next day she woke up and asked what was for breakfast and lived for another 6 months! Maybe from her perspective her life wasnt as bad as it looked to me.
Unless you have experienced the gradual loss of many of your body functions you will have little idea of what it feels like mentally or physically to know what outcome will be. Only we can rationalise ending it with continuing living a life that’s not really a life for many of us PWMS. My life was no longer a life the day I was diagnosed. This is scary for me to read but I would be lying if I said the thought has never crossed my mind as I often find myself thinking about it for example Dignitas and cost of, bravery and more. Unless you are in this one way tunnel none of it makes sense. It’s all about bravery IMHO
Thank you for acknowledging rational suicide. It's one of the totally taboo topics and I certainly won't discuss this with doctors, lest they get bad ideas... There is most definitely a point at which I would (will?) go that route, I can't quite say where it is but almost certainly before I am bed ridden.
As for the elephant in the room: As a Swiss, who has always been strongly in favor of MAID, I've yet to hear of a credible case of a patient being pressured by medical staff , no matter how much opponents like to trot out the argument. You would expect those cases to make the news in a country with a liberal regime... If anything, the incentives in the system are to prolong life and suffering unnecessarily. Having said that, some of the organizations in the space *are* shady. And there might be the odd family member with less scruples.
Thanks. Don’t really know except what I’ve read.
I have heard there are some not so good places around Dignatis (sp?) but I suppose that’s competition. Of sorts.
Dignitas itself has a bunch of issues (sketchy books, reportedly getting debanked which usually happens for a reason), even so, probably still a more legit outfit than the newer, smaller competitors.
Exit (not to be confused with Exit International which is very questionable), usually considered gold standard, to my knowledge only serves domestic patients which solves a bunch of thorny issues.
Just thinking out aloud!
This is a massive topic but one that does need addressing. I now wish I could relocate an item on MS News in which a person with MS says she is going to focus on her mental health, stating something like good mental health is the foundation for her dealing with MS and all the challenges it brings.
I am thinking that there must be a lot to learn from the Cancer community and I’ve just read a few bits about suicide among cancer patients is several times higher than in the general population and that at some point many patients do suffer from depression and anxiety and think about suicide. Something I picked up from reading around the topic of addressing mental health and suicide ideation in patients is the importance of finding out if the patient has any past history of depression, anxiety , self harm or suicidal experiences
Maybe there is a need for a wider discussion sharing ideas and suggestions about mental health, suicide and suicide ideation in people with life limiting and life changing conditions.
I do think that a kindly face and kindly non judgemental attitude from MS staff could make a massive difference to any MS patient who is struggling with depression, anxiety and any thoughts of suicide.
It’s 19 years since I was diagnosed and I can’t fully remember how I felt at the time but yeah, maybe some gentle , possibly indirect words about how the health profession recognises that the diagnosis is a lot to take in ( to face) ,that I will be worried for me and my family and then something vague about helping me/ guiding me through any mental and emotional journey of coming to terms with the diagnosis and seeing beyond it
Did not know that statistic re cancer. Metastatic can affect the brain. I do know there is a lot of life planning now, which certainly wasn’t the case 30 years ago. It was “5 years, you’re good”.
I fully intend to keep open the choice to end my life on my terms. I am a pwMS, but I doubt it will be MS that takes me down. Given my health arc it will probably be something cardiovascular. 😄
Understand…stroke risk here! Who knows?
Just trying to discuss the suicide statistics around MS, and how an MS diagnosis fundamentally changes your perspective on who/what the enemy is, can end you up in many years of concerned mental health assessments at each visit. The person with MS would prefer to spend our short time together on their concerns, not your misdirected sense of obligation. Discussing the very real statistics is reasonable, not suicidal. I was interested on any perspective on how patients ended up in that place, and I still feel like that is the main concern at each appointment. I mentioned the S word.
Suicide as a rational decision v mental health issue!
From my point of view one year ago it was a very rational, thought out and organized decision. Luckily my wife contacted our GP and after a very difficult meeting the suicide crisis team visited us a number of times and I gradually came out of that hole. At the time though there was no point in trying to convince me otherwise, the best option for my wife and our children was for me to be out of the picture. For me it was about making the best decision I could which ultimately would make my family’s lives far easier with less anger from me.
I got to the point where I had made my choice and I was relieved that I could actually help my family in some way.
There’s a lot more to this story which would probably get a bit boring so I’ll stop there. It’s been very difficult and I am far better than I was but I can see why I thought the way I did.
I thought my decision was very rational but now I know that it was my mental health blurring the view.
Talk to somebody and listen to them.