Are we afraid to talk about death and dying?

I thought it would be interesting to see people's views on death and dying, and are we as a nation scared to talk about it?

Talking about this subject can be difficult and no one likes to think of their own mortality.

There are benefits to this though, like being able to plan what type of care you have at the end of life.

The NHS have produced information about such issues, so you can if you want have a written record of what you do and do not want to happen - such as not being ressucitated.

Dying Matters is a coaltion set up by the National council for Palliative Care to promote awareness of death and dying.

This week (14th - 20th May) is Dying Matters Week - the aim is to get people talking and reduce the stigma that for one reason or another makes 71% of the British public uncomfortable discussing death/dying and bereavement.

Some good websites to look at are:

dyingmatters.org/

endoflifecareforadults.nhs.uk/

The website directly above has information on how to plan future care.

Let us know what you think.

Jo

23 Replies

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  • Thank you for raising the subject there is no stigma in dieing it happens to us all though it distresses families to discuss the detail.

    Kind regards Ethel

  • Personally, I think the subject of ones death should be discussed, its a sensative subject I know, but on a practical level, if there were something discussed with close relatives, and those who have partners, Husbands, Wife etc, and perhaps your wishes set out in black and white so to speak, it would, surely, be less upsetting for relatives etc, as when that time comes, they are not left in a situation where they have to make decisions on your behalf, when they are upset enough as it is. And gives the individual, peace of mind, knowing their wishes will be carried out. Part of life is death. I like many others have been in the situation, where I have cared for people closest to me, till the end, and have had to make decisions on their behalf, perhaps the wrong ones, as it was never discussed with them.

  • This is a subject I did once raise on my personal COPD blog discussing the end game, the final stages of copd. Dying is one thing not one of us will avoid. We are all going to get there one way or other, some sooner than others. I have discussed it, but many shy away from the subject. Speaking even in hushed tones if someone is dying. The truth is we are all dying, even those without COPD. Our illness is sometimes classed as terminal. Living is too:-) In reality COPD is a slow progressive illness, I have had it since 1987, and something else will, if you do the right things, probably get you before COPD. I am willing to discuss it, but the 'reaper', better find something else to do if he is looking at me, because I ain't going anywhere soon. laughs.

  • FYI; the BLF North West are working in partnership with The Cheshire & Merseyside Palliative and End of Life Care Network, To raise awareness of the National End of Life Care tools available to patients.

    30 respiratory health care professionals attended two training days and have now been assigned a named end of life care facilitator for support, information and access to education.

    We hope that this will Increase the use of end of life tools implemented by respiratory health professionals

    Support respiratory health professionals to increase their knowledge in end of life care

    Increase the number of patients having access to an advance care plan

    I am now in talks with the Greater Manchester, Lancashire & Cumbria network to extend the project.

    “the care of dying is a very human occupation which offers an opportunity for pure giving, because the dying can never repay what they receive” (Richard Lamberton)

  • Thanks for the links Jo.

    I like your attitude Derrylynne. :-)

    Its good to know BLF are concerned with care of patients and involved with the National End of Life Care tools.

  • I swore I would stay off the computer today but ... lol ..

    Just wanted to reassure you Stitch that your fear should not become reality. Things are set to change a lot over the next couple of years. The plan is for most if not all our care to take place locally or at home. There will also be a lot more emphasis on 'self management'. The aim is to keep us out of hospital unless absolutely necessary and to have a more 'hospital at home' arrangement up to and including death (unless stated otherwise in your personal care and EOL plans) - using Tele health monitoring and visits from nurses as required. Care plans and End of LIfe (EOL) plans will be a great part of this. Your input and preferences should and will be paramount. This will tie in with the new local Health and Well Being Boards (though they may yet settle on a different name for them). Local GP's, nurses, OT's, health visitors, housing, transport etc will all be better integrated in an effort to provide better and more comprehensive care.

    The overall vision is to keep all those with long term conditions in better health by meeting all their needs - a community team will work with the patient to create their care plan - you will be able to review this and update it as and when you wish. As well as holding copies of this yourself, GP's, nurses, acute teams etc will be able to access it as needed giving them a good overall picture of you and your circumstances as well as your clinical needs. Obviously things will be on a need to know basis, but hopefully this will prevent scenarios where someone is sent home from hospital to unsuitable accommodation for example. Needs for domestic or personal help at home should be more quickly identified and catered for, and so on. If it happens as planned it could be fantastic - if being the operative word. All this is supposed to happen against a backdrop of cuts to both NH and council services. :(

    The basic tele monitoring kit for those with very severe or unstable COPD will of course be pulse ox and probably BP and weight. These will be measured - by yourself - daily and sent through to the nurse/ technician. If any change or cause for concern is noted, they will call you immediately and have someone straight out to you or send an ambulanc as needs dictate. You can see more about the Tele Health / Tele Care side of things here - there is some amazing technology around too -; dh.gov.uk/prod_consum_dh/gro ... 100947.pdf

  • There's something even worse than that Stitch. Having a care worker who cannot speaky de english, who is just told in the care workers office to go bath, change bed or dressing of said patient. Imagine if you are in pain or wanted to communicate something that might make you more comfortable, but the person does not understand you. There are many non english speaking care workers now, its something that is of concern.

    At least with english speaking care workers we can still stamp feet and holler to be heard, that is unless they just then pop a sedative in our mouth to keep us quiet, in that case we can only hope for a happy pill. LOL

    I hope in the care tools for patients end of life, listening skills are always applied to patients individual needs.

    Wishing for all the best care worker who does the best job caring for all our needs.

  • OOPS! TRY THIS ONE (sorry other one above is out of date i think);

    Download Whole Systems Demonstrators: an overview of telecare and telehealth (PDF, 644K)

  • I'll take a rain check on pdf 644k. Signing out.

  • I've more or less left it to my husband to decide once the time comes (always assuming I go before him of course). Do I want resuscitated? If something happens next week then you bet I do - I'm not finished yet, but who knows what I'll be like in several years time. My husband knows my thoughts and wishes on the subject and I trust him to do what is best for me, no matter how hard it might be for him.

  • CarrieMe...that is mostly how i feel... i have had "the chat" with my husband so he knows what i want if things go wrong for me.Its not something i dwell on even though

    i have severe Copd and on 02 as i`m not done yet.The last time i was in hospital 5 years ago the doctor wanted to discuss DNR but i refused.I dont know what my future is but i want the best chance i can get.

  • Thank you for all your comments, it can be a very tricky thing to talk about, Derrylynne and Serene1 have hit the nail on the head by pointing out it 'happens to us all' and 'part of life is death'.

    This post is not meant to be insensitive but more to raise the issue that people can plan what care they would like.

    Keep the comments coming!

    Cheers

    Jo

  • i have no fear of death.

    My only fear (if thats the right word) is the way i die - obviously i don't want to die in a lot of pain but the dying itself holds no fear for me. i have all my plans made, my family know exactly what i want from what i will wear to how my body will be disposed of. Even the rules i have laid out for looking after my partner to the money left when my flat is sold. I have left instructions to cover everything.

    My family get upset when i talk about it because i am still only 50 and they seem to think i will live forever ( at least till i'm 100yrs xx lol) so i have trickled the information slowly. I understand it will be a distressing time for them and they will be forced to do things they have never done before ( register my death, arrange funeral, deal with my finances etc) but i want them to find it as painless as possible and this is the reason i have let them know now what they need to know for the future.

    Confession- i have lost 2 children and as a spiritualist believe that when i die my boys will be waiting for me along with the rest of my love ones who have passed on. i think that makes the prospect easier to come to terms with when it happens and giving my relatives the information they will need in the event of my death

    K

  • Drawing attention to the fact that some persons are not proficient in the English language, such persons being allowed to work in medical care insitutions, has nothing to do with racism, it has erverything to do wih realism, seeing as how presently too, in Britain doctors and nurses are to be controlled far more when coming from abroad to make sure that they CAN speak English.

    The reason is a lack of language skills among medical staff is dangerous and allowing it is irresponsible.

    Outside Britain, for example, in the Netherlands, this situation does not exist because if an individual cannot speak Dutch they will not be employed in a medical institute.

    After all, should an English doctor be allowed to work in a hospital in India, Africa or Brazil if he/she knows only English?

    How can that be good?

    How will the English speaker communicate with the Brazilian when discussing complicated medical matters?

    What if the person, on a ward with very ill people, says, ''I'm dying for a drink of water" and the helper only understands; she's dying? Communication is definitely is more than important, I see it as a right.

  • and yet sadly there are people who die for want of a drink of water on our geriatric wards - the frail elderly, surrounded by native English speaking nurses.

  • Hi Everyone

    Can we keep this discussion on topic please - there has been some really great discussion and comments about death and dying but it has been sidetracked into a discussion about individuals experiences and opinions about the care system.

    So someone start a new thread if it's an important issue for you - let's try and get this thread back on track.

    Thanks

    Mark

  • i agree stitch, i want to die with as much dignity as possible.

    i hope that when my lungs decide they cant take anymore i just go to sleep and peacefully slip away.

  • I think with the present awful trend of not accepting age, and seeing it as something ugly, will play into this non-acceptance as death being the logical other part in a pair, like salt n pepper, life & death.

    Those botoxing their faces, altering their appearance because they see age as something ugly is not a natural way to be. I recall, as a child, seeing my grandfather (and other older people) and thinking that they were beautiful, in no way did I ever look at my granddad and think hey you are ugly, on the contrary, I loved him precisely and specificaly because of his weathered face, his big ears, his big nose, all of it was like that to me, it all fit in to the sense of nurting and security I got from those older opeople who as a child one automatically is in awe of for it is they who have so much to tell.

    Littlens are seen as being so cute by grown-ups, a little child sees things the same way, thinks/experiences the elderly in a natural way (not yet conditioned by society in any way) thinking in his or her way that the grandparents are cute too.

    Lines in a person's face can be seen as being something beautiful, worthy, noble, there where a culture at least appreciates such things as wisdom come about through years of experience. The small child senses these things, loves listening to stories.

    It seems these things have been lost in Western society and this is one of the biggest reasons why in Western culture only life is accepted and clung on to, in an absurdly unrealistic and unnatural way, with no acceptance of the other part of the dualistic nature of things: death.

    Existence is dualistic, the planet appears to operate according to the terms of dualism, thus to ignore that part of reality is in fact like a kind of illness in itself.

    Our culture in the West is saying, hide age, make everything revolve around youth. The practice of age discrimination has become so great that even though it is possible for human beings to see things in a totally different way, presently many cannot, and this is due partly or greatly to the media, that shapes perceptions.

    However, in Western culture, dealing with death, seems to have become something dark and most often is very heavy to go through.

    Of course there are many, or rather multitudinous situations around death, like natural death or through a tragedy, but someone who gets knocked down by a bus, that may seem in a way, a different kind of tragic than so someone that has had cancer for a number of years and has come to terms with it.

    My personal fear is not for me, but for upsetting anyone else.

    More than this though, I travelled and lived in many different countries,and specifically, in India and Nepal.

    In Varanasi, in India, a holy town, a pilgrimage place, where people actually go to die, I had my preconceived conceptions about life and death really tested, I was shocked and changed my thinking.

    After the shock and with understanding, I came to love how things were done there, as it was in fact a beautiful thing, a joyous sense of celebration of what the person was in the greater picture.

    The idea (belief/concept) that we are all on a journey through life, on a wheel, and according to our thoughts and deeds, are reincarnated, whether I could accept and believe in reincarnation, seemed like a much more successful way of dealing with such an enormous event as is death, as is life. I was stood watching the day, and the River Ganges, in Varanasi, and they were bringing about 15 bodies down onto the ghats every hour, on stretchers, wrapped in white sheeting, adorned with bright flowers and with lots of incense with bells ringing, chanting as they went, ram ram, ram ram.

    Then standing there I saw that someone was drumming, others dancing, laughing & crying, and at that point I was shocked. Within my own culture, everything had to be doom-ridden, everything in black, everything hidden, so that it is almost not real, thus providing a sense of great of separation instead of realization of the fact that death, whichever way it takes place, is part of existence.

    I'm sure if it had been a child who had died tragically they would not have been laughing and dancing but the thing was, someone explained... Hey listen, they do not see things the way we do back in England (Europe/the West), here life is seen as something where you are PUT in to learn, and death is a release of the spirit, as life is seen like a wheel which we are all on, so if so someone dies, even if tragically, the thinking is that the person who died would not want the loved ones to be so very upset on their account.

    With this then, they dance for the deceased, thinking that the person is now with the great Mother, which is something to be joyful about.

    I couldn't help but agree that the person who died would not want all of the people he/she cared about to be upset on his/her account (what a responsibility), at least, certainly not ONLY be upset. It was put to me that to be upset and solely upset would in fact be upsetting to the deceased if they could see you. It wasn't said that they actually COULD see you, but the thinking made sense.

    Life is not all about sadness, and working out someone's death, I feel, like the Hindus do too, a natural way of processing everything is to use all the tools of expression, including laughing, crying, comforting, holding, letting go, dancing, playing music, all with the deceased in mind, with love.

    Arriving back in London then having my dad die shortly afterwards and attending that type of funeral made me sad, not (only) because he had died, but because of what I had just experienced in India; I'd have much preferred my dad to have been taken care of as the dead are in India, to my mind meaning general acceptance of reality, making it far easier to process death.

  • Hi John

    Thank you for such a beautifully written post.

    There is a lot of effort to try to keep people looking and feeling young - beauty creams and serums to stop the dreaded wrinkles - hair dyes that will cover the grey!

    You are absolutley right that aging is a natural process and death is something that will happen to everyone.

    Many authors have quoted the old line of 'nothing is certain but taxes and death'.

    It is important to remember though that individuals can try to some control over what happens to them when they are dying - planning what they would like to happen such as signing Do Not Resuscitate (DNR'S) - where they would like to be - what pain relief they would like.

    The leaflet 'Planning for your future care' can be a good place to start.

    Cheers

    Jo

  • Hi Stitch

    Usually a DNR order is considered when there is a risk the patient will suffer further and the chance of rescusitation is low.

    All NHS Trusts must have a DNR policy in place.

    You can access the leaflet by going to:

    dyingmatters.org/page/plann...

    Cheers

    Jo

  • Talking about Death ?. Well I was an undertaker for most of my life, So I'll open up with. If anyone has a question, please feel free to contact me, ask away. Any Myths about Death you want to know about I know theres plenty etc. We should talk more about our Mortality. regards to all Breath Easy ! :)

  • Good Morning Everyone

    This link is regarding an individuals right to information on dying and how it can be helpful for doctors to talk about this more with patients and family.

    bbc.co.uk/news/health-18101418

    Kind Regards

    Jo

  • The open university have launched some great 'life skills' courses. One is about living with death and dying. It's a 4 hour at-distance / online course; might be worth a look!

    “Exploring knowledge and beliefs about death; encounters with death affect people’s lives and the concept of a ‘good death’ from an individual perspective to enhance the quality of dying.”

    Here's the link:

    openlearn.open.ac.uk/course/view.php?id=1621

    Let us know if you find it useful!

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