Assisted dying. Heavy thread warning.

[Tinkerbelle]

Ditto x

[EJ81]

Also very pleased this didn't get passed. This and the drugs taken off the drugs fund would have been too much xxx

[Marirose]

Belinda I read the past posts which I found upsetting as 2 ladies are not with us anymore but I was in agreement with you all and I am glad it has been rejected.

[belinda]

Pleased the bill has been rejected. 

[belinda]

Very concerned about this bill being passed today, I understand it's a possibility. Reading through here again, our late friends posts, nothing has changed my mind. And drugs have since been removed from the Cancer Drug Fund in England. If this bill is passed palliative care will, I believe, become even harder to access, it will change thinking amongst doctors, oncologists, nurses. It's hard enough now that we are accessing drugs as to whether they are universally value for money. 

[belinda]

Thank you for the reply Anna. X

[Anna_BCC]

Dear Belinda and everyone,

The Assisted Dying Bill, if passed, would make it legal in England and Wales for adults of sound mind, with six months to live, the right to end their life at a time of their choosing. Two doctors would have to independently confirm the person was terminally ill and had reached their own, informed decision to die.

If passed, the Bill will mean a significant societal change because it’s currently an offence to encourage or assist a suicide or a suicide attempt in England and Wales.

The debate among the peers, in the press and in your posts on this thread capture the divergent opinions. There are those who believe assisted dying is a fundamental human right for the terminally ill, and those who fear that right could easily turn into pressured obligation for the vulnerable. We understand the arguments on either side of the debate and are listening carefully.

At Breast Cancer Care, we know that many people living with secondary breast cancer have specific needs that aren’t being met. These include little or no access to specialist nurses and emotional care, ineffective or untimely symptom support, and not dying in their chosen place.

Whatever the outcome of the Bill, we will continue to campaign to improve the standards of care for people living with this complex disease so that everyone, regardless of where they live, or their beliefs receives the expert support that they need.

Please do continue to express your concerns about this here and if you would like to talk to anyone, please do contact our freephone helpline 0808 800 600 Monday to Friday 9-5 & Saturday 10-2.

Best wishes

Anna

Forum Coordinator

[Tinkerbelle]

Hi,

I have looked at the website concerning the assisted dying bill and see that it is, indeed, only for those who are deemed to have six months or less to live.  It also says that the patient must be:

Mentally competent

Have had all of their end of life options explained them

Able to self-administer the drugs to end their life

All this seems pretty straightfoward.  This bill only seems, to me, to protect doctors from prosecution for prescribing life-ending medication.

Sensitive again.

It doesn't actually say that it is not assisted suicide, but it does say it will not 'Legalise assisted suicide for people who are not dying'.

It also says that without this bill being passed, people would continue to take decisions without adequate safeguards which included, bizzarely, the decision of 'ending their lives themselves'.  A link to those words tells the sad story from the wife of a man with MS who took his own life 'while he still could, rather than risk becoming  physically incapable of taking his own life'.  The suggestion was that with this bill he could have lived a longer and happier life.  Without wishing to be disrespectful, once he became incapable of taking his own life he might not have been eligible for assisted dying as doctors are not allowed to administer the drugs under this bill.  A more convincing case was a woman's statement about her mother's last months and I can see why this would have been an option for her.

The website also claims that this bill is supported by 80% (it doesn't say who).  When you look at their research, it only includes the general public, people with religious views and disabled people.  There doesn't appear to be any opinion from terminally ill patients.

I believe people should have a choice, but I am uncomfortable with assisted dying becoming legal and some of the reasons given for choosing it as an option. 

Tink x

[2catlady]

Hi,Tink,not strong at all xxxxx yes,I think they are super coating the same thing,if you take your life it is suicide,not assisted dying. I think they are trying to make it sound like a "good" thing!
Hi,ladies,what scares me is they keep throwing out the comment the NHS is in financial crises , well it's not our fault! It's made to sound like if you opt to die it's doing the decent thing and not being a burden on the over stretched NHS.
I agree with Belinda,never mind "bumping us off" let's help people die when their time is up and not before pain free and peacefully with dignity. And not made to feel a burden to their families or society.
80%?? Well I wonder if they are all terminally ill,I think not. Until you have walked in a terminally ill persons shoes you can't say you are in favour of it,grrrrrrr
Ej ,thank you xxxx
Huge hugs ,Helen xxxxxx

[belinda]

I am very concerned about this awful proposal now. Does anyone know if Breast Cancer Care or Macmillan have expressed an opinion on this? If they have I have missed them. I too feel it's mostly the thoughts of well people that are being listened to. Some have the we are kinder to our pets opinion but I don't want to be compared to a family cat, dog.
The Liverpool Pathway was stopped because of cases where unsuspecting patients did not even know they had been put onto the pathway. We should be helping, supporting and enabling people to live well with cancer and that includes a peaceful death, if it's possible, at the end. It's hard enough for some to obtain their rightful benefits and now a proposal to assist dying. All of which leaves me with the impression long living patients are a drain to the well, society, the taxpayer. 😞

[EJ81]

And Helen I agree, all life is precious. I hated feeling like I'd been written off. I would never have agreed to the biopsy on my liver (they weren't sure what they'd found) if I'd known that confirming the spread meant I would be treated so differently. Never apologise for being negative - getting it off your chest is a good thing, and therefore it becomes positive xxx

[EJ81]

Hi Tink I don't think it is too strong. I think you hit on a lot of what it is about this bill that makes me nervous. I've just been on the campaign website for the bill and it says it should be assistance at the patients request. However it does say it is NOT assisted suicide, as this would include elderly and disabled people, it is aimed at terminally ill people with 6 months or less left. As someone on here already pointed out being told six months is by no means a certain dx.

What I found really alarming was some of the tweets scrolling on the page. I glimpsed one that was referring to the bill as 'practical' for me that is one step away from calling it convenient! I know this probably wasn't a campaigner but it is still very worrying.

They say 80% of people are in support. I wonder how many people in our position would support it?!

[Tinkerbelle]

Morning all,

Helen, you are not being negative (as though only 'positive' thoughts should be allowed).  Being written off is hardly a happy notion and we should have the right to fight if we wish.

Very sensitive topic follows.

I'm going to throw something out here now that has been bothering me a bit and it is a sensitive subject so apologies beforehand.

The bill is titled 'Assisted dying'.  The last time I looked this topic was referred to as assisted suicide so that those who wished to end their lives but were unable to do so on their own could be assisted in their choice.  As far a I am aware, the individual still needed to complete the task themselves and I understand and respect why someone might make this choice.

The change of wording to assisted dying, to me, seems to be to make the idea 'kinder' in peoples' eyes, but is also more vague. For me, the words assisted suicide would make it clear that it was my choice to end my life and mine only; I only needed help to set things in motion.

Assisted dying, on the other hand could mean anything, including me not being aware that I was being assisted.  Suicide is a very strong and emotive word and I can see why it was changed, but I see this as more of the slippery slope.

If this post is too strong, please let me know and I'll remove it.

Tink x

[2catlady]

Hi,Ej,yes,it worries me too. If you have to take the pills yourself without anybody's help then it can't help people with "locked in syndrome",paralysed etc. it does look like it's for people like us. We secondaries get a raw deal to start with without people thinking we are a burden on NHS and should "do the right thing" all life is precious and doctors should not even be considering it.
I hate it when I see reason for treatment written down as palliative ,it feels like I'm being written off. I want to should at him why can't you fight it,how do you know I won't be cured. It gives you no hope at times.
God sorry that was a bit negative.
Huge hugs,Helen xxxx

[EJ81]

Fascinating thread. I do worry that, as secondaries, we get written off in terms of treatment. It worries me that it could get worse if we have assisted dying as the 'fallback option' instead of trying every treatment possible.

The moment my DX changed from primary to secondary (just after my mx) my onc started talking about changing the chemo to give me a 'better quality of life' which quite frankly terrified me. Fortunately she also suggested getting a second opinion from someone at the royal marsden and they decided I was young and fit enough to have some of the same drugs as the primary ladies so I'm about to start EC.

It scares me that doctors could start thinking its easier not to bother as we could just opt out if it gets too much!

Helen it really sounds like you've been neglected. I hope you can get a second opinion from another hospital. xxx

[belinda]

Hi again Helen, I hope you can get better care somehow....you should not have to fight for the basics, scans and suchlike. 😞 Take care..x

[2catlady]

Hi,Belinda,I could write a book on the awful care I've had from my hospital. I don't think there's a royal marsden anywhere near me I'm afraid. My GP is a lovely man but no help too.
Huge hugs,Helen xx

[belinda]

Oh Helen I'm shocked at the lack of support and care you are getting from your hospital. Are you near another hospital? You can get a referral to the Royal Marsden, Christies if you are in England. Even a one off to see what they think of your hospital's current treatment plan for you might be helpful. Keep fighting, is your GP any help?
Hi Bev do ask for genetic tests. Won't bore you with whole story but breast, ovarian and prostate cancer are in my family. Although I never knew how much until after my own diagnosis. I don't have BRCA genes but my family are now eligible for early screening because of my history and because I investigated, got tested.

The assisted dying proposal, as I understand it, won't help those campaigners who wanted to choose when to end their lives because of their serious mobility problems as you have to administer the tablets or liquids yourself. So this is only for those with a terminal illness with an expected life expectancy of less than 6 months. But we all know, from claiming DLA or the new PIP benefits, how impossible it is to predict life expectancy. It covers a huge number of patients, many thousands, as many cancer patients, with various cancers, are living longer. Amongst all those thought eligible it's, in my opinion, highly likely many will feel obliged to die sooner rather than later. I agree with you Tink listening to some on the television, radio, it all eventually sounds, to me, like a good money saving plan for the NHS and the 'right thing to do' as why 'throw money' my words but I feel this is the underlying message from some, on someone you cannot actually cure?
Desi, I'm very sorry to read about your sister. X

[2catlady]

Hi,bev,we always suspected a dodgy gene as my dad's mum and all his sisters died in their 40s from BC. But I was told as no living relatives with BC I couldn't be tested( apparently NICE have changed rules now) so when I got diagnosed last year I got tested for my sister and son. And I came back positive, my sister then got tested and has just found out she has it too. My son does not wanted to be tested and that's his choice. But I feel so guilty I could have passed this onto him.
You will get tested if a lot of early BC or early prostate cancer in your family and they see a trend. You probably haven't inherited it from him if he's the only one in family.
Massive hugs to you,Helen xxx

Hi,Jo BCC,thanks,Helen xx

[Bevlaar]

Helen, its unbelievable that you cant get the tests you want

. I dont know which area you live but my hospital is a dedicated Specialist Cancer Centre and I always feel safe there unlike at times attending an ordinary hospital. 

Mind you, at my initial consultation I had asked Onc would it be possible to just remove my mets surgically,  seeing as I only had 2 (large ones). I did say it slightly tongue in cheek ....and his reply was " I don't see the need to really".

I had at the time translated this to mean that he didn't think it was that threatening but in hindsight I'm wondering if that really meant that he didnt think it "financially viable" due to my life expectancy!  Maybe I'm wrong but....?

By the way were you Brca tested automatically? I was going to ask about it as there has never been any type of cancer in my family before my dx in 2005. Then in 2009 just before my second primary dx, my dad was dx with prostate cancer which had already spread to bones then 2

 years later to his lung.

Do you think I could have inherited a gene from him?

Lots of love and massive hugs ♥

Bev xxx

[Jo_BCC]

Hi 2catlady,

I'm sorry to hear that your medical team are saying no to your requests, could I suggest you give our helpline team a ring and have a chat with them, they may suggest getting a second opinion is the way forward.  0808 800 6000, lines open 9-5 Mon-Fri 10-2 Sat

Take care,

Jo, Moderator

[2catlady]

Hi,bev,I think the same thing. I had to fight for a year to get my mastectomy and only got it because of progression. I wanted double max because I'm a Brac carrier I got a no I can't have one ,I wanted my ovaries out I got a no. I do think it's because I have SBC and they think what's the point your dying and not worth spending money on. I also wonder if this is why they won't scan me. That will be another fight on Monday,which frankly is wearing me down.
I've also said the same thing you did to my hubby which upset him.
It may just be my hospital but I do get the feeling they are just going through the motions with me as they have to so god help us if this bill gets through !

[Bevlaar]

I think Belinda that youve made a very valid point there about people possibly being made to feel selfish in wanting more treatments while terminally ill. I believe it would be difficult knowing where to draw the line if this bill came in. 

As a point of interest....something that happened just an hour or 2 ago...I was lying on the sofa with my legs stretched over my hubby's lap and he was kindly massaging my feet when he noticed the bunion on one of my feet seemed a bit larger. He was gently rubbing it and said "that looks slightly bigger than it was. Do you think they can operate on it to remove it?"

To which I replied without even thinking..." oh they probably wouldn't think it was worth it now" .  He looked quite taken aback and asked why do I think that?

My immediate thoughts were that the NHS would prob not consider it due to my secondary dx! 

[belinda]

I wasn't sure about bringing the subject up here, hence the warning in the title. I was watching the news Sunday night and one person said everyone he had known with cancer had wanted to live for as long as possible so he had grave reservations. And that has been my experience bar one friend who had struggled with depression prior to her diagnosis. With the NHS at breaking point my fear is that a few years after assisted dying became legal it would almost be seen as being selfish to keep wanting treatments. So many people who have a view on this are well and pontificating on how they would feel. I'd be interested to know the line BCC have taken on this.

[2catlady]

Hi,Tink,xxxxx sorry,I think I'm a little sensitive too.
It was 14 years since he died and it still hurts so much and I miss him every day. I'm glad he never found out he had passed the Brac 2 gene onto myself and my sister as it would have broken his heart.
Sorry,you are being made to feel a burden from your other half,that's so unfair.
Yes,I think it will put pressure onto the terminally ill. Can you imagine if they have life insurance that runs out,will they be pressured into death so there family can collect money. It fills with me dread with the implications of this bill.
Huge hugs,Helen xxxxxxxxx

[Tinkerbelle]

Hi Helen,

No, of course I didn't think that    My post was in relation to what I had heard on the radio and then after I'd posted it I realised I'd basically repeated what Belinda said.  It wasn't really in reply to anything anyone said; I just saw the thread and jumped in hence the caveat about sensitivity and offending in case I did by accident.

That must have been so hard seeing your dad so ill and I bet he cherished every moment he spent with you.

I want to be here for everyday I can as well, but I am aware that there may be others in worse situations who may feel differently.

My other half is already making me feel that I am a bit of a burden, but that's a whole other story.

I, personally,  feel that passing this bill could put undue pressure on terminally ill patients to end their lives for reasons other than to relieve their own suffering.  I was shocked that the comment about being a burden was even made in the interview.

Tink x

[2catlady]

Hi,Tink, I'm not sure if you thought I was agreeing with the bill from my last post but if you read my first post you will see I totally agree with Belinda.
It's the being a burden bit that frightens me,that terminally ill people could think that.I hope I will never be thought of as that. My dad died at home from lung cancer and he was never a burden and I would have been more devistated by his death if I though he thought that.
It's an awful bill and should never go through. I fight every day for another day with my family and I'm not giving up without one hell of a fight.

[Tinkerbelle]

Hi Belinda, Helen, Desi,

I might be being a bit sensitive at the moment so that may be reflected in this post.

I caught a little of what this bill was about when listening to the radio.  I didn't pay attention to all of it as we were trying to enjoy our holiday, but the bit that did stick was about people perhaps choosing the option of assisted dying as they didn't want to be a burden to their families.

This really upset me.  The suggestion that I might be too much of a burden to my family and should consider taking my own life was not something I had seriously considered, but the thought is there now.  The implication that you should end your own life because you are a burden seems very cold.  I appreciate that looking after someone with a terminal illness must be very physically/psychologically/emotionaly draining (I've not had to do it), but there seems to be a 'trend' - Jenni Murray springs to mind - of pressure for the terminally ill to 'just go quickly and quietly' for the benefit of those who (hopefully) will live long and happy lives.

It's bad enough to have your life shortened without subltly being told you should shorten it a bit more because it's a pain to look after you.  How about more support for carers.

What do terminally ill patients in pain and suffering want?  I can't read their minds but I suspect, given the choice, it would be to live as long a life as possible without pain or suffering due to new treatments and bettter care, not the chance to check out early.

I'm sure for some patients this bill will be welcomed and I respect that, but I tend to see it as the slippery slope the same as Belinda.

I hope I haven't offended anyone - please forgive me and let me know if I have.

Tink x

[Desi-2]

Hi Helen and Belinda I must say I have always thought myself firmly in the camp of legalising assisted dying. I spent almost a year visiting my twin in Stoke mandaville after a spinal injury and witnessed some truly tragic outcomes but reading your views has made me question my thoughts. I wonder also how many others who agree with it haven't thought it through quite so much. Thank you ladies for educating me and opening my eyes to a much bigger picture xx

[2catlady]

Hi,Belinda,that would be great if that gets passed. I see new treatments but the time scale for when they will become available scares me. I know you were in your 40s too. I think I'm being pessimistic as mine changed to grade three and basically triple negative so I'm so scarily aware my time will be sooner rather than later. But I'm fighting and hopefully something will turn up. Hugs to you xxxx

[belinda]

I was early 40's when I was diagnosed Helen. There is another proposal I'm following, it's from Lord Saatchi, not Nigella's ex but his brother. He lost his wife to ovarian cancer and is trying to pass a law that will allow cancer patients to try new treatments much earlier with doctor's permission and monitoring. So some good things are being explored. 🙂

[2catlady]

Hi,Belinda,yes,it did scare me the chemo issue as I've never crossed that bridge and I though OMG! It's so bad you want to take your life! But saying that it was a very good series and I think it helped people who are not living with a life limiting disease understand how we feel.
I know,the House of Lords do have a lot of old people in and if you are in 70-80s you could be thinking well I've had a good innings I would go "quietly" (sorry I know
All old people don't think like that)
There are so many of us in our 40s fighting for our lives. I know I'll never get to 60 but I'd love to get to 50 and I don't want some old person deciding it's time for me to go and giving doctors a get out clause to not offer us treatments.
My hairdresser did say one of her elderly clients with SBC was not being offered chemo as too old (late 70s) my mother who is in her 70s agreed and said at that age what's the point as she's had a good innings!! (I don't see eye to eye with my mother on a lot of things) but I do wonder what the old people in House of Lords will think too.very worrying!

[belinda]

Hi Helen, I gave those programmes a go but never saw the whole series. It's a shame the lady with BC had such a dreadful time with chemo but if I had been watching the programme newly diagnosed her words would have put me in dread of chemo.
The proposed bill is being read in the House of Lords this week, I think. But how old are some of those in the House of Lords? When you are the actual patient, have a young family, are not so old yourself you might think quite differently from anyone speaking in the House of Lords. Not that you can't think differently when you are in old age. One of my hospital doctors told me many of his elderly patients fear they won't get the same treatment options offered to younger patients. Worrying.

[2catlady]

Hi,Belinda,I totally understand where you are coming from. I personally want and will do anything to stay alive to see my son grow up. I'll do chemo after chemo and fight as feel totally cheated that I've been robbed of half my life.
I have had the gremlins come when I'm feeling down though it has entered my mind that I may become a burden and lose my dignity at the end and weather I could do a "Hayley" and I expect we all have at sometime.
This is where making it legal can start the slippery slope. It frightens me that doctors will not fight for us because of the expense as they now have a get out clause to save the NHS money. Also if we are feeling down have had an awful relation to chemo.( not sure if you watched my last summer,when the BC lady said she'd take pills as was so ill after chemo and wouldn't go through it again) will it be seen as being kind if we are allowed to take our own lives.
While it's against the law we still have people fighting in our corner who are not thinking(out loud anyway) of the bottom line. As we all know if you want to end it you will.
I hope it remains illegal and I pray I don't get to the point where I'm wishing it wasn't.
I very thought provoking thread.

[belinda]

Is anyone else, like me, feeling uneasy about the proposed move to allow assisted dying? Yes there are supposed to be safeguards put into place if this becomes legal. As I understand it you would have to administer the tablets that would kill you yourself but I do worry about the repercussions surrounding this if it becomes common practice. Some terminally ill patients might feel obliged to take this route so as not to become, in their mind, a burden to their families. I have read so many times here of how we are desperate, me included, not to be written off when we receive a secondaries diagnosis. It's all the ripples that will be created from this bill that concern me. The NHS only have limited funds but if we start to see those who cannot be cured as being potential patients to take their own lives at some point might it be even harder than it is now to access new treatments? Only a couple of months ago there was an article in The Daily Mail written by a Doctor who stated he would never take chemotherapy 'just' to prolong his life. Should he ever be in the position, he wasn't, he would stay at home and quietly die. Well in that case I would have died in 2008. Chemotherapy can be doable, worth the side effects, very effective. It all seems a bit of a dangerous slippery slope.