The Good Death | Full documentary - by Tomas Krupa (2018)

[Music] foreign [Music] my life is light waiting for the death wind like a feather on the back of my hand dust in some light and memory in corners wait for the wind that chilled towards the dead land grant us thy peace i have walked many years in this city i have kept faith and fast provided for the poor have given and taken honor and ease there never went any rejected from my door who shall remember my house where shall if my children's children when the time of sorrow is come i am tired of my own life and the lives of those after me i am dying in my own death and the deaths of those after me let thy servant depart having seen thy salvation [Music] oh um so uh life isn't fair but it may as well be me with a disability as somebody else there is nothing that would make me be so special that it would be unfair i accept that i have a problem but i live with it i have no choice but to live with it at the moment that was my mother she had muscular dystrophy but we didn't know because it was never diagnosed until i was diagnosed and then we all realized what was wrong with my mother so it was too late to do anything not that you could do anything actually so she spent 30 years just sitting in a chair all day long doing nothing i don't want my life to be as hard as hers so that's why i'm making arrangements to go to switzerland [Music] [Music] [Applause] [Music] so [Music] this is my formal request to erica made on the 20th of july 2016. i formally request voluntary assisted death on the 22nd of september 2016 i am a 72 year old lady suffering from inhibited limb girdle muscular dystrophy for which there is no cure or treatment until two years ago i was able to care for myself and home i now need help in getting out of bed and find it hard to get up from a chair i have not been able to make a meal for myself for quite some time and even to make instant coffee is quite an achievement the degree of my disability makes me realize the futility of continuing my life with the sure and certain knowledge that further deterioration is inevitable therefore i request your help with voluntary assisted death thank you [Applause] only can you take this some paper rubbish for me please thank you it's just just that lot this is oh no i get so much for one person anyway and all the threes we are supposed to say i know i know i know you want me to vote i will ask you to post more than one letter no um i can't remember his first name so i'll just call him mister yeah why not bye yeah see you next time take care love you enjoy yourselves yes while it [Laughter] lasts [Applause] i in turn have passed this muscular dystrophy to my son my daughter who is 49 is hopefully clear of muscular dystrophy he has no children and neither does my daughter so this generation my generation is the last hello there simon i hope you're having a great day from today until tuesday in washington it'll be partly cloudy most of the time but tomorrow it'll be mostly sunny there's light traffic in washington district of columbia usa hello simon this is to let you know that i'm going to switzerland in september i don't think bridget is too happy about this but i am determined to go my life here is such a struggle and will only get worse so i need to go while i am still able to travel when you speak to her or email her can you please convince her that i am doing the right thing i can honestly say i can't wait to get there and get the whole thing over with love mum and i think i'll reply okay but i insist that i come with you so although we have been born with this disease it doesn't show itself in in the body until middle age and it doesn't really affect you i became concerned when the progression of my disease became a lot stronger a lot more quickly and i wasn't expecting that i was expecting a very slow progression and i wasn't expecting this disease to kill me and now i find myself building a lab because there's very little research done in this disease and i would like to change that and bring some attention to it at least i don't know if i will ever benefit from this work but maybe someone in the future might who knows but i think i should do something i must do something otherwise i'll just be sitting in a wheelchair doing nothing people have families who try to persuade them not to do what i'm doing i know that a lot of people will find it very difficult i mean you've accepted virtually a hundred percent i'm not quite so sure about it as perhaps um as perhaps rachel is i don't obviously i don't yes because your whole being speaks for you you know it's not that you're saying something and you can see you're all uptight and it's actually a terrible problem you can see that it isn't a terrible problem i'm going to die at a time and in a way that i can choose it is not going to be horrendous it is not going to be painful it's not going to be stressful is a good death i think i had a stepmother who was irish catholic and very very very very against the idea of ending your life prematurely and then if you were going to suffer a lot that would be good for you and that would be god's will for you that you did have that suffering and it is your duty to die when god decides you're going to die not a moment before it's rather terrifying it's not the sort of god i believe in if i became a burden i don't think i would want to exist much longer if there were no way that i could get out of that situation if i were in such a state that i needed constant care then i would not want to [Music] exist [Music] [Music] the um [Music] [Applause] we are not bonded in the way that most families are she remarried and i did not get on with my stepfather at all um it was a very very poor relationship so that's why i haven't seen jan for many years and what you're seeing here um in this stain those are the protein aggregates this is the bit it's not dissolving and just building up exactly this is where all the the um myotillin that's got the the mutations are kind of sucking up other proteins and itself and they're aggregating and causing these clumps yeah so if we can arrest the further addition of myotillin adding to the size of this maybe then the cell can figure out a way to clear that eventually clinically we know that that patients with myotilenopathy develop these aggregates but it would be nice to correlate yeah with what we would be able to potentially generate in the cells that we could produce from from those biopsies i would like to give you as much useful stuff as possible okay we haven't published this yet and it's not by any means a therapy for this however lindsay did a study where we injected these mice the muscles of these mice that have already developed limb girdle muscular dystrophy with something called cardiotoxin it's basically like a snake venom interesting and what it does is it kills all the muscle and i already told you that mouse muscle has a capacity to regenerate very quickly right so if you inject these muscles these mouse muscles that are there you know they have muscular dystrophy they're weak they're small if you inject them with the snake venom kill the muscle that muscle will regenerate and it starts from scratch yes so it's basically normal again at the beginning and then over time it would accumulate aggregates again so if there was some way that you could destroy and repopulate your muscle which is not possible right right now that would offer a treatment that's interesting i can't imagine a therapy being based on right killing knowledge in humans right killing large amounts of muscle in an oldish person older person yeah it wouldn't regenerate yeah my gp he has completely refused to help me he sent a psychiatrist round to see me they made it quite clear that all they needed was two doctors to say that i did not know what i was doing and that they could admit me to hospital immediately and virtually lock me up i was given the option of going on to medication to stop me from being depressed so yes i opted to take the medication and yes i opted for the mental health nurse to come out every week to see me she then informed the psychiatrist that yes i was absolutely fine nothing to worry about i had changed my mind completely and wasn't going to go to switzerland if i told the truth i would by now be in hospital sectioned under a mental health act [Applause] [Music] i think i've had two very interesting marriages my first husband was quite an exciting person to be with although i don't think he ever took any of his responsibilities as either a husband or a parent seriously when i married don who didn't have any children of his own he became my children's stepfather we were very happy for most of our married life [Music] so [Music] this has been discussed between us over a period of years that we both promised each other that if either of us got to the stage that our lives were miserable and unhappy that we would take the steps that i am taking and we would support each other in our choice this is my daughter there i have booked a flight for her there she is um and a hotel room for her she is supporting me in as much as she understands what i'm doing and understands why um but she would rather that there was an alternative she keeps sending me pictures of wedding dresses and so that i can say which ones i like and which ones i don't like she has not set a date i have said set my important date but she hasn't so i cannot wait forever for her to get married i have not been up here since last october so it's a long time since i've seen oh i can see that everything needs water it's beautiful i can't believe sometimes i would sit in the front garden and i would just think this is my little bit of eden and that was all i wanted you know i've had all those beautiful houses that i made i built them and the gardens and then suddenly i'm living in a ending up with nothing living in a grotty flattened as well i think things could be about to change don't you tony don't you caroline think that things are going to change a bit um her mother took everything and said take the baby and go so we end up with nothing him we came here in summer clothes with no money nothing look in here this is astounding it's so everything's so beautiful i can't believe it you know on the one hand there's this wonderful gardeners beautiful house and then through tragedy we might live here i don't know we haven't spoken about him but the duality of the scenario is uh so terrible you know i want to say stay i can help you carry you and help you stay you can't leave this place should we look around ah i feel terrible [Music] let's have a look where did you say scarlets was do you know what road i suppose don dies in two years time say what happens to the house then probably absolutely nothing that whoever is already the incumbent um i am sure could remain incumbent if that's um what he wanted the question of ownership has to arise at some point yet the ownership would still be um my children it's it's it's in trust the house is in trust now you have decided you're going to come and live here haven't you tony i'd be a little worried that someone might come along and say right yeah dream ends today get out no no no no it will not end for at least five years and i think it will go on longer but there's this thing i want to stop oh feel free it's lovely to meet you you little sweetie i suggested allele targeting experiment and turns out he'd already thought of that and a couple of years back he um had submitted a grant proposal that was accepted but not funded it's the way the funding buckets work but he's going to resubmit it for me this thing doesn't work hold on darling let me get that so he's going to resubmit it to the old so he's going to resubmit that for me and he was really keen on uh knowing the family history my history um all sorts of stuff and he once and he told me he didn't the lab and in fact no lab in the world has a cell line against lgm d1a oh really no cell line no they no one can do an experiment on this diseased cell so he wants me to go back in spring and they're going to stick a stonking great needle in my arm and get a tissue culture that can live in immortality so at least researchers have copies of it um oh that's pretty cool so did you get any ideas for your research no other than knowing that a little specific interference is good is a likely candidate well then i could do some computations on that and maybe do an experiment that's reasonable for a lab like mine i might actually be able to do that there's no way i would ever want to work on mice and i don't think it's even i'm sure it's not even legal to work on rhesus monkeys that would be and i wouldn't want to anyway that's horrible those are complex experiments right you know i've never designed it so it's okay i mean do simple experiments see see what you can do that would save him time right well to me that's him to me that's horribly complex and scares the hell out of me to him that's his day-to-day work right but there's no point of having a lab a full lab downstairs you're not going to really put it to use i know so use it i mean there's [Music] there's little chance anyone else is going to do this yeah i know there's only steve harper's lap doing any work on this i know and there's only a handful of people with your condition probably no one with your condition that has the credentials and the know-how to do this well i don't have any credentials i'm not sure about the know-how but anyway um you you've worked in the lab well yes you have a chemistry degree yes yeah you're an id degree you have science degree so use it yeah i'm going to keep pushing you because this is not just your life it's my life too i can't do it i can't help it makes me feel very [Music] i can't help i want to i can't you're the only one who can i don't think of this as courage i'm taking the easy way out to carry on living would be courage but not this if i had courage i wouldn't be going to switzerland but i'm not brave enough to carry on living as i am now and how i know how much worse my situation is going to become control of one's destiny resides only in that person and other people can't mess with it or have any right to it [Music] i would go as far as saying that it is a fundamental human right to end one's own life suicide let's put it in simple terms huh hello charlotte there it's jen again sorry to be a nuisance um could you pop round later on um this afternoon after you've brought the children back from school um need to talk to you um nothing at all to worry about i have been trying to catch up with you for a while sweetheart so hopefully you'll get back to me bye i have something to tell you and i think you may have an inkling what this actually is because we've talked about it before but i need to tell you that at the moment don't worry because i'm quite calm i need to tell you that at the moment i intend leaving mersey on sunday no no no it's i'm more i'm all right i just want this [Music] it is it it is all right because it's the best thing i know your [ __ ] [Music] i'm finding it a bit of a struggle living here so what i'm going to do when my son was here last april or may and what he suggested was that as his house is already converted in america it would be a good idea if i went to live with him in america that's it girls um so it wasn't bad news really was it because it's going to it's got a happy ending right i shall never forget you two don't worry yeah it's all that sweet girls i'll be back in a minute okay jess thank you john bye-bye sweetheart are you gone yes i'm not going to america you know but i couldn't tell these two i have received an email from bridget when yesterday telling me not to bother going down and give you a ring because they were arranged to take you in a luxury car both simon and bridget i can wear two to where you want to go by car to basel yes well i would like to talk to her and convince her that the the the root you've chosen is the only one she can support really oh jeff thank you i don't know on earth just count to ten by elite look it'll get started in it that's why i've come down to try and help you sort it out simon and i would support mum at the appropriate time but not now simon thought he was just taking mom just for an exploratory trip not the final trip he has only just realized the full situation he's still taking mom and we are both hoping that they will reject her and that she will return bollocks no way i'm sorry no way no way my plans have not changed in any way they're not going to change and all they are now doing is making me extremely angry and upset i've got everything sussed out everything organized i've been happier in the last few weeks and i've been in the last year and they go and do this to me so i could reply by saying you have spoke i have spoken to you and uh whether you go or not you you are going ahead with it yes right that's all it needs thank you for coming down and being such a wonderful wonderful cousin and i've just got so many happy memories of what we've done together i hadn't seen jan since 2000 and two um so that's many years i can't count um jan and i never had a relationship where we needed to see each other or communicate or talk really um our relationship has never been certainly since my teenage years at least a typical mother-son relationship it's more like cordial friends my sister bridget is clearly upset by the whole thing and she has a different relationship with jan and that is more of a mother-daughter bond and she's naturally extremely concerned and doesn't want this to happen neither do i i don't want it to happen there's a certain sense of inevitability and as long as i can make sure that it's been done rationally and she's thought about it very deeply then i will have to be happy i have had to tell people so many lies to get to this stage the whole process will really have taken me 11 months 11 months of struggle 11 months of really thinking through of am i doing the right thing thinking through how i'm going to tell my family how i'm going to tell my friends how i'm going to convince them that this is the answer and i don't have any alternative foreign i shall need money money i have some there travel money i will put in there and english money and more i could enjoy spending you [Applause] and more englishman i am rich but i can't take you with me when i go so never mind eventually dimitri got his wish after weeks of protest he was removed from the battlefield and flown home [Music] but employees told us that hundreds of their fellow fighters will never return [Music] [Music] all right and i as well leave that stick inside now simon do you want to what the hell am i going to do this stick the same as i do yeah i know i'm not buying sticks for a few years but i'm still walking yeah you're still walking in fact you're doing very well simon no i um had a neurological consultation the other week it's not neurological what is yours then limb girdle muscular dystrophy type 1a so is yours it's not it's not neurological well you're missing a protein discs yes not neurological well i know that you understand a lot more about this than i do and then we can talk about that website simon which i didn't join and i should have done it doesn't matter [Music] to [Music] so [Music] it will turn all right [Music] thank you thank you [Music] we do have a not more than two assisted dyings a week i should only have one a week if i do more than one a week it is too much for me i also have to get over assisted dyings and people like janet you know she's such a lovely lady it is not all that easy to let them go i do not have to take responsibility for janet janet is taking the responsibility for herself i just have to make sure that she has been thinking it over well and she that she doesn't come too early people who are very badly handicapped they have to come too early to be able to travel to be able to come at all this is why i'm fighting for legalization so so hard if they could do it in their country i guess they could wait a little bit longer when i do assisted dying i always think whether it is okay to do assisted dying or not when i think back to my past i have not always been accepting assisted dying i haven't even been thinking of assisted dying some days i was very deeply into palliative care and terminal sedation in some cases and i think if you would have asked me whether i accept the sister dying those days i would have said crazy i'm here to prolong life and not to end life as a doctor is um nature is something wonderful i think nature and god we were made by god i do not know whether i can believe that but i do believe in a good god who does not want us to suffer he does not want us to to suffer unbearably suffering is made by human beings at least partially you know when i when i save someone who has a heart attack or by reanimation maybe god would have wanted to take him back to to end his life and then i stop god from taking him up to heaven and two years later he dies from a very bad cancer with an awful lot of suffering i do not really know whether suffering is made by god whether is not more made by men and i think god hasn't only given us the possibility to do these blood tests and find out what we can do against illnesses he also has given us the possibility to to give assisted dining with a wonderful medication without suffering at all and this is not a sin i'm convinced 100 if it was a sin i wasn't that happy [Music] when my father had his second stroke couldn't talk anymore had a hemiplegia and he tried to kill himself taking all the medication all the pills he found in my house then showed that he's going to jump in front of a train to kill himself this made me have contact with a sister dying for the first time i did love my father very much so i did not want to let him go i did want to give him a palliative way of dying at my home he would have never ever had to go to a hospital one of the point was that we were brought up very religiously and i would have loved to ask my father how how do you cope with your religious beliefs how do you cope with the sin that you're killing yourself and i couldn't ask him because he couldn't answer he couldn't find a word he couldn't write he couldn't express himself unless saying yes or no with his head so i did not ask but when you sit on the bed with your father he drinks the deadly medicine puts his head on your shoulder and dies after having had a good sip of red wine i think then you start asking yourself is palliative care really the only way isn't there another way that you should accept also after he had died i told my sisters and brothers to not tell anybody why he died on the funeral we're not going to tell anybody i had bad consciousness being a doctor and being a religious person and then one of my sisters said i'm not going to tell a lie if somebody asks me what did he die of i will not tell another stroke and there were 150 people on his funeral and i had to stand up and say yes i accepted an assisted dying which was very difficult for me but it was it was okay and nobody complained they all understood they all knew my father very well and they could understand which made it a little bit easier for me but not easy she'll be here any minute i'll sit here maybe maybe if you could sit on the bed if you're right it's okay would you like is it okay for you that's okay for me [Music] the lady can sit here or we have talking a lot we have been talking a lot now good good good talks yes i always i also mentioned the fact that she tried to end her life already before and we had to talk about how important it would be that she could do it at home i have been talking about finding the right time for a sister dying with janet and she definitely seems to be one hundred percent sure that timor raised her tonight yeah as you told me before i talked to janet um she is of sound mind she knows exactly she can explain she has been thinking about it for a long time yes she is not influenced by anybody else to do this she's rather held back by you to do this so definitely she's not pushed by anybody to end her life she is suffering from an uncurable illness which we cannot stop if i would have any possibilities to stop your illness i would not give you an assisted dying then i would stop your illness and you would not ask me for an assistive dying day that is absolutely true so all the circumstances for an assisted dying for tomorrow are given i can find no reason why i should say no you are very happy about it and you we can see how relieved you are when we talk about yes tomorrow is going to be your big day of leaving um i can also understand that you are sad that you no i'm not sad not realistic no i'm not at all sad in fact i have my reservations but i'm not sad i have been ever so careful in my life to develop very fundamental philosophies and i had to think very carefully over the last few weeks whether i was even prepared to make any exceptions simply because a member of my family was involved the answer is no okay yes that's okay that's okay i have been thinking about what happens afterwards you know it's so nice to talk to someone to see your smile to see that you're relieved and all of a sudden there's only sort of the cocoon and the butterfly is gone yes we will never know but we will definitely all go that way the matter is only how we do that way let me give you a hug thank you so much thank you see you tomorrow thank you very much thank you thank you thank you very much thank actually you're as strong as your thing as your mother but it's i know how difficult it is are you at peace with the universe i am totally at peace with the universe i welcome this with open arms i need to do this to get my peace we've got that we're we're okay with that we never okay we understand we never have been against that right i don't think we need to make it no one's you have the option there are options you know what they are they are if you wish if you don't wish that's fine as well sarah and i will do whatever we can to improve quality of life and if you decide and we hope you do but also we respect your wishes if you decide that actually you would like to put this postpone we will more than happy to do whatever it takes and we can drive you in a bentley private jet whatever to get you here if that is what you wish if it's not then we're just putting that on the table just make sure you're make sure you're aware it's always saying it's all we're saying isn't it that you are not being pressurized there are options and we can make things work on a grand scale can't we simon that's all you need to know and if it's six months and you want to to to come back in six months we will be here i will bring you back i can only say thank you to that we don't want that to bother me but having got this far and having been such a tremendous struggle i that's my point i have the two options on thursday yes you do i can either live yes or die yes and i am going to take okay the second that's but there is another option and you just need to know what the ocean looks like and we're telling you what the option looks like and that is better quality of life and you're doing this whenever you want to my quality of life i know is not going to get any better it can only get worse you know that and you know that and it is difficult to accept but it is a fact of life or in my case a fact of death i have been so sorry for the sadness the sorrow that i have inflicted on other people i am only sad that my life has got to the stage where this i feel is necessary remember i can see my destiny right now yes of course you can simon right and i'm good i had the same conversation with chandra six weeks ago and the fact that you can see your destiny i find that more tragic because i know that at some time that you are perhaps going to have to make the same choice as i've made [Music] [Music] i have to push the button [Music] it's a big thing to press that button and i'm curious because i want to know what's happened [Music] if i press that button is that the absolute total end of me i don't know [Music] oh but i am just so curious i want to know and i so much in many ways want to know what is happening on earth there is so many things that i really still will want to know about do you still definitely want to end your life today definitely no change in you no change [Music] i hear it ordered a foundation eternal spirit to transport my body to the crematory in basel and to get my death certificate as well as my earned from the authorities and to send both to my home country do you definitely not want to have it sent no yeah are you well or yes what would you because this is a two-day process right we will not be here we will be here now very happy to come back to switzerland but we have the ashes sent to us and we can scatter them somewhere where you desire i'm quite happy i think for switzerland yes yes that means we will have to come back you want do you want your ashes scattered where someone doesn't even know or care what is what is janet um you are going your way yes after you die um you are somewhere your spirit will be somewhere we don't know we will meet sometime and your rashes will stay back here your children will have to go on living and i would i would do them i if they fulfill your last wish having come to with you here i would like you to fulfill their last wish to be able to scatter the ashes in england on a place that you like if that is what they want yes i think that would be important okay right okay i'm not scared don't know i don't think this is a good time to talk about yeah everyone knows my wishes yes but you'll be able to do that more easily because you know now what's important it will not be as stressful okay and i'll look after everything i'll go and see john make sure he's okay yes yeah he will be it is 15 grams of sodium pentobarbital which is a sleeping medication and if you give it in such a high dose it's a very very big overdose this 15 grams and it it leads immediately to heart and and also um breathing failure so within within about four minutes if you give us give it intravenously within 30 seconds you fall asleep very very deep anaesthetic sleep and then within about four minutes you have a heart failure really so we did questions now yes what is your name my name is jeanette butlin and what is your date of birth 23rd of june 1944 and can you tell me why you came to life circle i have muscular dystrophy which is now so bad as i find life far too difficult i have set you an intravenous needle do you know what is going to happen if you open this trip yes i do what will happen i will die you will die yes yes now janet if you like to die now you're allowed to open this perfusion yourself so uh [Music] would you open the window a little bit that's good she's reno [Music] so [Music] [Music] so [Music] [Music] [Music] so [Music] i'm sad that she's gone i'll never see her again it has certainly changed me it has changed my attitude towards the future i.e there's not much of it left i'm hoping that by the time i get to my 70s this choice will be available and understood and recognized and accepted it will just be a choice it's not something i will or won't do i can't say now i have no idea [Music] but i hope the choice is there [Applause] [Music] [Music] [Music] [Music] [Music] you

Channel: First Hand Films

Views: 109,322

Rating: 4.8160348 out of 5

Keywords: Documentary, God, religion, faith, death, life after death, current affairs

Id: zFsf0PvQbE8

Length: 82min 41sec (4961 seconds)

Published: Thu Jan 21 2021