Right To Die Scheme

[Lainey]

to everyone with these sad stories

Years ago my grandparents contacted The Euthanasia Society in london and got forms. they were filled in in front of all the family and 2 outside witnesses. the forms were a legal document which stated that in the event of them becoming unable to take food and fluids themselves, they were NOT to be given food or fluid artificially.

It never applied to my grandma but it did with grandad, he was taken to hospital numerous times with failing health and parkinsons disease, eventually he was not taking food, fluids or medication orally and they wanted to give it artificially- The doctors were shown his Euthanasia form and agreed to adhere to it immediately. He was allowed to die the way he wished- naturally. He received no food or fluids but was given regular pain relief

As a family though it was very difficult to make the decision, as we knew it would kill him and we felt like murderers at the time. We had to put our feelings to the side and remember what he had said to us the day he filled in the form-'Promise me you wont let them keep me alive when i have already started to die, promise me that you will let me go'

All the medical staff were fantastic and ensured my grandads wishes were carried out- they also said that they wished more people took the same initiative.

It is much more common these days for patients to be issued with a 'Do not attempt resuscitation order' which in my opinion is a good thing.

[Kathyw]

My Mum is in the early stages of dementia and is frightened of many things, almost paranoid about some stuff.

At the moment I can re-assure her by saying I will never let anything/anyone hurt her but I worry about the time when my words have no meaning for her and fear is all she knows.

Mum said to me one day that she is terrified that one day she will not know who I am and she wept saying would I still come to see her. I told her I will always know who you are, you are my Mum and I will come her to see you whether you know who I am or not and that pacified her.

There are two women in the home who have full blown dementia and they are in a world of their own. They are like two five year old girls. They hold hands, they sit and giggle together and share 'secrets'.

One of them can be very difficult when not with her friend. She becomes belligerent and can be spitful towards other residents (Mum got pushed and hit by her and she swore at me because I walked passed her) but fear doesn't come into either of their worlds.

I wish it were so for my Mum.

 

The heartbreaking stories on this thread have made me weep.

Edited May 15, 2008 by Kathyw

[fee4]

like Kats inc-i am an only child, without children-i am also a nurse.

 

i have already made the decision that once my OH/parents die i will move into retirement accomodation-simply as there wont be anyone to help me out with changing a light bulb/mowing the lawn etc when i am alone in my 60/70s. there will be noone to advocate for me

 

having also nursed people in situations where i knew they wanted death-and if it was in my ability to give it to them i would of-i know that if i had any inkling of mental deteioraton i will make that choice for myself-i do not wish to be at anyones mercy-i have lived as a bloody minded independent soul all these years-im not prepared to lose that...i too have made a living will.

for me the value of life is not its length....and should not be judged as such

 

fee

[melissa]

Kathy - my mum too is scared of not knowing us, I can already tell it is taking her longer to put a name to the face. What a horrible disease it is, I am having to look at homes for her this weekend as she is so vulnerable and like you said afraid.Unfortunately I also have a 54 year old sister who has never been away from mum and lives with her she had a brain tumour when she was 8 & has suffered much ill health since then & has short term memory loss! It is going to be heartbreaking seperating them but there is nowhere they can go together unless my sister is confined to living with elderly people with dementia - nightmare. I know how ill my mum is because she seems to have emotionally shut down. To see such a strong woman that left a horrible relationship (with my father) with 7 kids at a time when you didn't leave your husband, never received any benefits and work her way up to director level at a company, bring us up all up with good morals, care for my sister throughout all her health problems & ensure we got a decent education just seems so damn unfair.

She would be horrified to see herself now she was such a proud and private lady who did hours of voluntary work on top of all the above and did I mention the rescue dogs we always had that had home cooked meals and were treated like babies!

So the more I read this thread the more I think yes given a choice & I hope I'm able to make it, if I end up with any of the illnesses here I would want to be given the choice of life or death.

[Kathyw]

Katsink although I was not an only child, I am the only one now and we do not have children. I do worry a bit about what would happen if I was put in a home and there was no-one to speak up for me.

Not to help me on my way - I leave that decision to the man upstairs but to make sure I am treated decently.

 

Melissa what a heatbreaking decision for you to have to make. At least Mum was fine about going into a home. To have to seperate you Mum and your sister must be awful.

And what a wonderul woman your Mum is - what she achieved and how proud you all must be of her.

I am in tears here - it's the fear they have that upsets me.

The time of their life when they should know only peace and contentment - fear takes over when they are least able to deal with it.

Edited May 17, 2008 by Kathyw

[owl]

Too close to this one at present to say much, but yes, I support the right to die. I think part of the problem is young and idealistic doctors whose principles won't let them see when it is time for palliative care only, and another major thing is the fallout from the Harold Shipman case which has brought up a number of new (and necessary) regulations about controlled drugs and death certificates - but has also made doctors and nurses very wary.

[ranirottie]

my health is bad now and I dread not being independent but more so I dread not being in control of my mind. I definately want the right to die with dignity and my kids know that. If i end up bed bound and mentally and physically incapable then I do not want to live to be a burden to anyone. But........................I think starving someone to death ie: witholding food and drink is a barbaric way to do it. If someone has signed a living will freely and had it witnessed by responsible people then why can't we die quickly and with dignity by injection as we do for our animals? x

[Kats inc]

I've been to a presentation on the new Mental Capacity Act today and for anyone worried you can get a lasting power of attorney for your health matters now as well as your financial concerns.Each one costs £150 and you have to register it.

 

Information here It's the alzheimer's website one which I'm told is by far the best and easiest to understand and has some good basic forms you can print off to use.

 

For those of us that may well end up alone I think this does bring a little peace of mind.

[Abigailj]

Although I agree with the right to choice it is only really able to cover the physical, my mother has late stage dementia, it is one of the cruelest diseases I have ever seen, if she could see herself now I know she wouldn't want to live - I'm not sure she even does to be honest, every day is torture for her, she is afraid all the time, confused & has absolutely no quality of life it is merely an existence - no court in the land would afford her the luxury of being able to make a choice as she would be deemed unfit -

I have a family member in a similar situation. Their condition has physical symptoms that really restrict their life, but also now dementia that is getting worse and worse. I wish they were allowed to decide for themselves.

[Kathyw]

Daisy is not very well at the moment and not very happy, the fall seems to have taken it's toll on her.

On saturday when I went in she was sitti ng at breakfast and laughing her head off, so happy and content that I just stood and watched her for a moment taking pleasure in her happy face.

On monday we were sitting talking and she was fine and then she asked me where her Mum was. Then where was my Dad when he died, this was upsetting her. I told her he was home and she was with him. I was worried as she seemed to be going backwards rapidly.

Then she brightened up a bit as the music was playing in the background - then my brothers favourite song came on and I could see him clearly in our living room dancing to it (he had just bought it) and I started to well up. Mum asked what was wrong and I just said I feel a bit sad is all Mum and told her why.

She said yes I remember that, he knocked my bloody vase over and broke it. I nearly peed myself.

The song was Save the last dance for me and it must be over forty years ago that this happened yet she remembered about the vase.

From then on she was as bright as a button, then yesterday in bed with a bad cold and feeling very down.

Her life is made up of highs and troughs, how I hate the troughs and love the highs.

But although I worry about Mum and cannot bear to see fear in her eyes, I know that I could never sign away her life even if it was what she wanted and that decision would be asked of me because I am the only blood family she has now.

Oh also knows that he would have to appoint someone else if that is his wish.

 

Oh why can't people who have had enough of whatever suffering they are bearing - just go to sleep one night and never wake in this world again?

[colliemad]

I fully agree with a persons right to choose how they die but as a nurse in a pallative/terminal care unit wanted to give another view.

 

Many of our patients have written a 'living will' detailing their wishes in certain cirumstances and where these exist they are always adhered to.

 

Our doctors always talk to the patient and family before making any treatment decisions and ask whether they want active treatment to be commenced. If giving antibotics for an infection or putting up a 'drip' to give fluids would not enhance the quality of life, then this is not done providing the family and patient are in agreement. Conversly if the patients wants everything possible to be done their wishes are respected.

 

I have known many patients admitted to the Unit in pain and with distressing symptoms,ask the staff to help them to die. With careful assessment and good management these same patients have been discharged home, free of pain and with their symptoms well controlled, to spend extra precious weeks or months with their family and friends.

 

It is not always possible to fully contol pain but it can usually be reduced to a comfortable level. Pain in the dying patient is not always physcial, however, there can be great mental pain as well and this can be more difficult to manage. We use alternative therapy in the Unit, aromatherpy, massage, reflexology and counselling to help with this and many families have been reconciled and reunited as a result of the help given.

 

While it is very difficult and upsetting to watch a loved one deteroriate and die, with good management it can still be a positive experience for the patient and the family.

Time spend with the patient can be used to really talk to each other and many precious memories are made doing this. We have had people marry whilst in the Unit and many parties and celebrations have taken place even during the last few days of life. Pets and children are welcome in the Unit and if they are are well enough patients can go home,sometimes for a weekend, sometimes for a few hours. They also go out with relatives, shopping, for a meal or to the pub!

 

The other point I would like people to consider is this; if the law is changed who would give the final injection? Would the relatives be prepared to do it and if they did what long term effects might it have on them? Would they feel guilty and would it prevent them grieving properly? Would the medical staff or nursing staff be expected to do it and what effects would it have on them? These are people who have spend their professional life caring for a patient and are now being asked to kill them. No matter how you phrase it this is what you are doing when you knowingly give a lethal dose of a drug. The other point is how would it affect the patients relationship with the nursing or medical staff. Would the patient refuse to have painrelieving injections, or worry about the staffs motives when they were discussing treatment options?

 

In what ways could we ensure that the patients interests were being served and not the relatives? Sadly not all relatives are loving and caring.

 

I would agree that there are many many patients who do not get anything like the end of life care that they deserve. Some of this is due to indifference but a lot is due to a lack of knowledge.

 

Good end of life care needs medical staff and nurses with specialised knowledge and the back up of a team of people ie. Physio, OTs, Dieticans, Social workers, to name just a few and the work is tiring and extremely stressful so good support for the staff is important. A scheme is being piloted all over the country to educate staff on general wards and community hospitals about end of life care.

 

Staff in general need to be educated and shown that such care is as vital and important as care during an acute illness. Medical staff need to be educated in drug use as many of the drugs we use were orginally designed for other purposes but work well on symptoms experienced by our patients. I have known many doctors frightened to use morphine in the correct dose for instance beliving, wrongly, that it will either hasten death or cause addiction.

 

Perhaps we should be pressing the Goverment to give more importance to this area of care so that in the future everyone will have the painfree and dignified death that they deserve.

 

I am not underestimating the emotions and pain experienced by the members of the forum, far from it, but I just wanted to give another view of the subject. Dying does not have to be painfilled and dreadful with loss of dignity and painful memories for the relatives. Hopefully one day pallative care will be available to everyone, after all we are all going to be in that position one day.

[owl]

Thank you for that thoughtful post.

 

I'm still too close to this, in fact the thread was started on the day my partner died.

 

3 weeks before that, he had asked me to help him die and I couldn't do it. Not because I thought it was wrong, but because I couldn't face the damage I would do to my 88 yr old mum and 83 yr old aunt if they had to watch me go to court and then prison, I couldn't face having Polly dog lose both of us, I just couldn't go down that path. There would certainly have been a prosecution, the police round here come down like a ton of bricks on anything that might possibly be euthanasia. We argued most of the night, we were both crying, it was awful. He had put a week's supply of opiates in a saucer and was ready to take them, but wouldn't do it without my agreement and support. In the end, he said if I could give him one reason why his life should continue, he would accept that. I replied that although I supported euthanasia, I had a very strong feeling that it was wrong for him at that point. I didn't know why, but apart from my not wanting to be arrested, everything inside me was screaming "NO!" He accepted that as a valid intuition, and in fact after that we were able to get some care and support for his remaining time. He spent those 3 weeks in a much clearer and calmer state, listening to music, enjoying Polly's company, talking to me, watching a bit of TV, so I'm glad he had them. But on the last night, when it was apparent he was unlikely to live more than a day or two at the most, he started hallucinating and became very distressed. We called the emergency doctor who sedated him heavily, and fortunately he died in his sleep before it wore off.

 

If I had legally been able to give him a fatal injection that last night, would I have done so? Yes. Would I have felt guilty? Not in the least. As for grieving, I did that over the long period when I watched him deteriorate knowing that things could only get worse. I have no capacity to feel any more grief and just want to get on with my life, and I know that others in my position have felt the same.

 

I've also seen things from the other side, having worked as a care assistant. Some relatives just want their gran/auntie out of the way. We even had to make one man a ward of court to protect him against his family, who tried to get him to sign over his house to them and then tried to get him sectioned when he refused. That lot were vile and would have stopped at nothing.

 

When there was a high-profile euthanasia case on the news, one lady I was caring for refused to take her medication because she was afraid of what might be in it to hasten her end.

 

I agree that we need a major reform of the approach to end-of-life care, and more hospices.

[Trudi]

My brother asked not to be tube fed or given Iv fluid as he wanted to die, he had progressive MS and had suffered 15 years of slowly losing the ability to control any of his bodies funtions.

 

He was seen by a doctor who agreed that he was in full control of his mind and had made the decision to end his life, the young doctor in A&E who saw him when he was admitted felt that he could not accept the decision made by my brother and inserted a feeding tube and IV fluids.

Once this had been done the doctors would not remove the tubes and it took Mark several more weeks before he finally passed.

 

I would not wish the suffering he endured on anyone and would have given him an injection at that time had it been a possiblity as we knew it was his wish.

 

Due to actions taken by that doctor my other brother who also had a terminal condition withdrew fluids whilst he still had full control of his body and hastened his own passing rather than face the same as Mark.

 

However my Dad passed last year also and he was in great pain towards the end but he was not ready to go and we fought the doctors all the way to get him treatment, to have ended Dad's suffering early would have been against his wishes but would have made it less painful and traumatic for us (he bled to death from a ruptured aneurysm, also had lung cancer). Had his ending been speeded up it would have haunted us forever, as hard as his death was it was natural and that was how he wanted it to be.

 

I guess the point i'm trying to make is that each case is different and a decision can only be made by the individual, i'm not sure this could ever be policed effectively to prevent some relatives 'getting rid' of elderly relations.

 

Life is incredibly precious and as much as we can try to empathise, if we are not the person suffering we cannot truly know their wishes unless they are able to express them at the time of the decision

[Kathyw]

Colliemad and Trudi - two of the best posts I have read.

 

As I have said I could never tell a doctor/medical person to take a loved ones life.

I would fight for my Mum and Ray to have the kind of care Colliemad provides with every fibre of my being.

My Dad wanted to die at home and was given that, he also would not consider taking his own life as it was against his beliefs but the I made him aware that the medication he was going to be given to ease his suffering would also hasten his passing over. At first he refused saying it was a sin but then relented as he realised the end was very close anyway.

Dad passed over with Mum a few feet away (twas the early hours of the morning) and myself upstairs. Until we all went to bed, we talk to Dad as I had been told that the last thing to go is the hearing and we wanted him to know we were there.

Dad made the decision himself.

 

I know that Ray would not want to be kept alive artificially and I would do everything I could to make sure that didn't happen but I could never say Stop feeding him, dont give him water'. 'Let him die'. That is not my decision to make.

 

Trudi my heart goes out to you for all you have been through.

[ReikiAnge]

Colliemad, thank you for your post, it has made me think about things in a different light

 

Phebe and Trudi, thank you for sharing your experiences. I can't imagine what either of you have gone through, I just want to give you both some very sincere