Dignity

[shetlandpeat]

Recently I have, with my family, had to make some difficult choices about another family member. Although we think we may know what we want when it comes to the final curtain, should we make sure others know. We tend to gloss over the longest journey.

 

So, how would you like your last days alive to be like. There are conditions in life that could remove your choice on what you want your demise to be like. Those with dementia are unaware of what is going around them, from my experience, there is very little forward thinking. Those with dementia may be unable to communicate, medical professionals have to use their judgement, and can only observe. No more that what a vet would do. Treating what they can see.

 

While looking at the history of the Globe Theatre, I came across this web site.

 

http://www.compassionindying.org.uk/

 

Is it something we should think about, especially as we are living far longer?

 

 

Should we not bother, you are not really going to know, are you?

[owdwife]

Thanks, SP this is really useful and has answered some questions I've been asking myself recently.

[beany]

its a taboo subject for alot, i discussed it with my parents a few times over the years, i knew what my mums worst nightmare would be. i knew she wanted her ashes scattered at Anfield, Tho i am sure she was joking about it being in the visiting teams direction at a crucial moment!! my dad and i joked that i would just put a builders chute upto the bedroom window and send him down it to the cemetery at the back of the house. we had light hearted chats, but i was never in any doubt as to what they really wanted and didnt want. Sadly my brothers were clueless and when we had a decision to make after my mum had a bad stroke, they did what they wanted and put my mum through 6 years of her worst nightmare, with them making the odd phone call and visit home, with myself and my husband doing the caring.seeing how broken she was and hearing her cry because her boys never visited was hard, I had numerous rows with them over it. then when she died they again took over and gave her all the hypocritical pomp and ceremony..... that again she didnt want. its important to know what people you care for want, but also providing the right people know, it can make it easier on the family to do the right thing.

[shetlandpeat]

Thanks, SP this is really useful and has answered some questions I've been asking myself recently.

 

You're welcome.

 

I think folk do not want to think about it. Sadly, when it is too late it raises its head. I feel the professionals as well as the family carers have to cope the best they can. It now feels very strange to be talking about the demise of a family member, it has now become deadly serious. We can only ask the opinnions of those who deal with this and are trained to help us cope.

 

I hope the web site is of help. There are downloadable forms and guidance as well as support. It should complement any advice I hope.

[shetlandpeat]

There are some interesting facts on the blog listed below.

 

http://www.campaignfordignityindying.org.uk/pages/home/0/dignity_in_dying.html

[shetlandpeat]

An interesting view point of an example of why assisted suicide should not become legal...

 

http://www.theguardian.com/science/2013/sep/17/stephen-hawking-right-to-die

 

Meanwhile, Baroness Grey-Thompson tries to frighten us all with tales of slippery slopes and deaths for convenience.

 

Dignity in Dying blogger and Campaigns Support Officer has a differing view.

 

http://www.dignityindying.org.uk/blog/an-assisted-dying-law-would-better-protect-us-all/

 

Of course, this is an emotive subject.

 

I have my own thoughts on this, I wish it was something we had discussed with my Dad, looking back now, he still has his dignity and there is still a sparkle of the cheeky lad he was.

[shetlandpeat]

Sadly, it seams that Government cuts are affecting folks lives in ways you may not have thought. Many folk with terminal cancer die in hospital, against their wishes because there is little or no social care made available to them at their home, this happens to over 30,000 folk a year.

 

Analysis from a recent national survey of bereaved relatives and carers reveals that for cancer patients last year, care in hospitals was often subpar to the care received at home. Of those who died at home, 63% rated the overall quality of care received as excellent or outstanding, compared to only 37% of those who died in hospitals.

 

 

As the Government makes up its mind about whether to fund and implement free social care at the end of life, thousands of people with terminal cancer are being left to die in hospital beds against their wishes.

 

LINK

[shetlandpeat]

It seems now the Catholic Church has voiced opposition to Assisted Suicide. Although I will respect folks personal views on Gods and the Gods representatives on the planet, I feel that the document is of course some what bias.

 

A document released in 2004 said this

 

 

responsibilities as Catholics to live well and uphold our God-given human dignity and that of those around us.

 

Would it be dignified to allow someone, against their will, at the end of their life to continue to suffer both with pain and the logistics of their condition until their body gives up.

 

Another document relesaed called Sense and Nonsense on "Assisted Dying" said this...

 

 

There are powerful practical reasons why the law shouldn't be changed. It's almost impossible
to be sure that a request for assisted suicide from someone who is terminally ill reflects a clear
and settled wish that has not been influenced by depression or pressure of one sort or
another.

Yet, if you were to ask folk now, would they like the option to be in control of their end, I would bet there would be many who said yes.

 

This has been proved by this Report

 

And this document; McAndrew S (2010) Religious faith and contemporary attitudes, in Park A, Curtice J, Thomson K, Phillips A, Clery E, Butt S (eds) British Social Attitudes: 2009-2010. The 26th Report London, Sage: 87-113 States that;

 

 71% of religious people agreed that a doctor should probably or definitely be allowed to end the life of a patient with a painful incurable disease at the patients request

 

 

Studies in the USA have been interesting, where it has been white educated folk who take the option, they are prescribed a solution for them to take when they are ready. I was surprised that quite a few did not take the substance, this was because they were happy for it to be there if they did need it.

 

The Scottish Gov are also looking into this, with this Bill

 

You can find out more on the Catholic Church thoughts on this matter HERE

 

Though I feel the Q&A document is not really representative and seems to be unevidenced, that is, there are no links to the documents that would support the content of the report.

 

I do hope that folk do not suffer intollerable pain and misery because of the thoughts of what seems to be a minority (on the face of it).

[shetlandpeat]

As we continue to give folk the choice on their lives, many discussions come about about the "content" of such lives. I would guess folk may have a yearning to do what they dream but the environment they are in can prevent or inhibit that.

 

However, we must never detract from dignity in living. We are good at living, far better than we are at dying. We talk more about life and generally there is a hidden fear of death, the unknown.

 

The issue with the assisted suicide is always based around mental health. Another part of the life process we are frightened of, and refuse to discuss, until of course it is too late, is mental health.

 

I found a list of things, those who were dying mentioned to a person who worked in palliative care.

 

I wish I'd had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honored even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

 

I wish I didn't work so hard.

This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

 

I wish I'd had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

 

I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

 

I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

 

 

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

LINK

 

Some other links

 

http://www.scie.org.uk/ 

 

http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/news/

Edited March 25, 2014 by shetlandpeat

[paulb]

Such a big subject. Really 2. Preferred place of death and the right to end your life. The second is a very deep and ethical problem that there is no right or wrong view. 

 

The best time to talk about the patient/relatives wishes is at the earliest time after diagnosis. There wishes on cpr where they want to die and what they will and won't accept. this is the time for a care and money power of attorney and an advanced directive. you will be pleased to know that the community nursing team are asking these delicate questions. 

 

The main cause of a terminally ill patient being admitted to hospital is not that their condition is not under control its that some doctors/hurses/carers paid and un paid don't understand the proper care of the terminally ill. Some doctors and thankfully its only a few still feel the need to try everything possible to prolong a persons life. \T|his usually involves being admitted to hospital and excessive interventions being tried. Whilst in reality the best care a dying person needs its to be kept comfortable and their symptoms under control.

 

the care of the dying is a very specialist area  that a lot of medical/ care staff don't understand. An example being a medicine pump that insures that the patients symptoms are under control without breakthrough pain and other symptoms. can be seen by some as a device that brings on death. Which of course it does not. delaying the switch from active treatment to pallitive care can and does cause more suffering. Another example was the liverpool care pathway when done properly it was an effective tool in managing the care of a dying person. ehen done badly it was a cruel way to die. again it comes down to training and understanding when someone has reached the last stage of life. acute medical wards are not the best place for this. 

[bresail]

I like the idea of this discussion, I have been  trying very hard in recent years to come to terms with the idea of my mortality. I do not fear it and I cannot compare it with other peoples experiences. My sisters death recently, shocked me and I realised that I was angry and it seemed to be because, I know that I will die. But why should other people die? At the moment I can't really explain that last sentence any better than I have. Since early teens I have been angry that the world is going to end. I have used the word angry again.

So back on track, dignity in death or how I wish my last days to be.

I do not want to be killed even by pulling the plug. I have and am enjoying my life, so experiencing death is a part of my life.

Is it really possible to have dignity in death?

I came into this life naked, crapping, spewing and screaming!

No one said that I was born without dignity in fact people said that I was a beautiful child, or so my Mother told me.

So dying with dignity.

Do we live with dignity? It is unfortunately a very rare state to find today. Dignity is easily bought off.

My final days I want to live them as per the advice given by Dylan Thomas to his dying father in his “Do Not Go Gentle into That Good Night, “ with a touch of Charles Bukowski's “Be Kind.†And the final words will be on my tee shirt, because I will be raging, raging.

It will be,

“Tell all the Truth.â€

 

“Tell all the truth but tell it slant,
Success in circuit lies,
Too bright for our infirm delight
The truth's superb surprise;

As lightning to the children eased
With explanation kind,
The truth must dazzle gradually
Or every man be blind. “

Emily Dickinson.

 

PS. On the back of the tee a picture of Miley Cyrus from “Wrecking Ball.â€

Regards,

Rex.

 

[paulb]

the difference between a good death and a bad one is simply one were your not screaming at every touch were your not choking on your own fluids.were your not settled and thrashing around with the pain. were your not ripping at your skin because you have an uncontrollable itch. were your mind is not clear. 

 

this is what ive seen in the past whilst working in a very old care of the elderly hospital many years ago.

 

A good death is where your not in pain/excessive pain. Where your comfortable and symptom free. Where you can say your goodbyes to your loved ones .

 

As you say  

I came into this life naked, crapping, spewing and screaming!

 

thats a bad death. for both yourself and your loved ones.

 

there can be a lot of dignity in death and thankfully the doctors/nurses are getting pretty good at trying to give the person a comfortable passing. 

 

Shetland health board is offering a lot of insert training to improve the care of the dying. After researching the community care provision on the mainland we are lucky in what we have. we are way ahead of most areas in scotland. the only thing we are missing is a hospice.

[shetlandpeat]

Death can be one of the most beautiful time of a life, for some it is when they are at peace with themselves and can become one with their beliefs. The last few breaths, and the wishes and thoughts in them will last forever.

 

One thing I regret is not speaking to my Mam and Dad about the subject, sadly, with my Mam, we were ignorant of the true facts and realities of her situation, then, it was too late, similarily with my Dad, we are in the same situation, though he is still alive, a living epitaph of the man that was.

 

Thankfully, I beleive he is happy as he is, though not my Dad in mind. I do wonder though, as time goes on, would he have wanted this. If you know you are fading in mind, would it bother you that your shell may live on for a while. My thoughts there are that if that were the case, I would need to consider the future of my children and grandchildren, it would be a difficult choice to make.

 

The dignity in living towards that end should be as important, as what happens to you would and could be the lasting memories of you. I have a friend who I am helping as there is some evidence her Mother is being abused by her carers, the difficult part is we believe it goes beyond an individual and is possibly the attitude of the institution she is in, even though she too has dementia does not give anyone the right to take advantage.

 

I find a huge difference with the attitudes to mental health, some think any action should be punnished, regardless, others see things in a way that shows compassion. Working with some of the young folk here abouts, I have had far more good responses by being positive, truthful, honest and compassionate. The young I see that do not get the dignity in their lives, who are continually berated and belittled are the ones who grow to be bitter and vengeful, they also show little regard for others, yet, once that has been broken through, their life takes another and better journey. This is important as it has been shown it has an impact at the lead up to death and the peacefulness of the final journey.

 

Watching the TeeVee series on catch up about death row prisoners in America, it was interesting to see that when the inmate was in the last few hours before their execution was planned, they got everything they asked for (within reason), compassion was shown and an attempt to be dignified to the condemned, yet, as soon as there is a stay of execution, the total opposite. For some here, they are lucky if they get any as they wait at their Gods bus stop.

 

Folk should have the choice to do with the end of their life as they want. It still saddens me to think of my Mams demise. Yet I know that all that could be done was done and the folk at the hospital could not have done more to get as many of our family around her. On the opposite side of the coin, a young lady who I represented lay dead in her flat for 10 weeks before those who were charged with her welfare could be forced to check on her, she was the last remaining tennant in block of flats. She died alone, in pain, over a number of days and without any dignity. She was that far decomposed, she could only be identified by her dental records and here family could not see her body or kiss her good bye.

[Ghostrider]

A good death is where your not in pain/excessive pain. Where your comfortable and symptom free. Where you can say your goodbyes to your loved ones .

 

I think you'll find many who would argue no death can ever be a "good" one. For most who would do so, they would argue the "best they can hope for" (which is completely different to a "good" death), is to wake up dead one morning, having gone to bed feeling fine, or to be hit by a bolt out of the blue they never knew was coming and never felt.

 

However much medical professionals may want to believe, or the victims allow themselves to be brainwashed in to believing knowing every tick of the clock could be the last they may exist for is even an okay situation to be in, if they're comfortable and have had the chance to say "goodbye", there's very little "good" about it I can see. Its still having to wait knowing the executioner's axe is hovering over your neck and could fall any second, and even if the victim has forced themselves to say "goodbye", it had more to do with following through on a charade they felt obliged to participate in, than genuinely wanting to do it or believe in or be comforted by it.

 

 

 

I came into this life naked, crapping, spewing and screaming!

 

thats a bad death. for both yourself and your loved ones.

 

there can be a lot of dignity in death and thankfully the doctors/nurses are getting pretty good at trying to give the person a comfortable passing. 

 

Quite frankly, a death has eff all to do with the victim's loved ones, if dying can't be all about "you", the victim, then its a pretty rough deal, as nothing in this life surely can be more about "you" than death. "Loved ones" have the "privilege" of carrying on living, and to be as uninvolved or otherwise as they see fit in the death of another - the one who is doing the dying is the sole star of the show, its their swansong, and to expect it to have to be tailored to "fit" the spectators and bystanders own selfish wishes is about as insulting to the victim as I can think of that it could get. If the spectators and bystanders to the event cannot have enough respect for the victim that they can't or won't accept it will be whatever way it will be, put up with it and deal with it quietly in their own way, they really have no place being involved in the event.

 

"Death" and "dignity" are mutually incompatible, to go from a coherent functioning independent creature to a lump of inert decomposing meat is never going to be performed in any kind of dignified manner by the victim. As for a "comfortable" death, that in itself these days is something of an oxymoron, the obsession of Health Professionals to "preserve life" to the absolute last gasp, has created a situation that has more to do with postponing death than prolonging life. Chances are by the time most deaths finally occur in the present, the victim has had to endure so much surgical and chemical intrusion that whatever disease or condition they were suffering from has been allowed to advance so far beyond where death would otherwise have occured that they are simply a lump of meat being kept alive artificially and have been aware of nothing and have had minimal or zero functionality for quite some time, or are so tanked up on chemicals they are in the same state. Death, when it is finally allowed to happen, may well be "comfortable" but only because the victim has been denied consciousness to make it so, but it equally may not be in any way "comfortable" to them, as having been taken to such chemically induced state, its dubious whether it can be proven beyond all doubt that they really are 100% in la-la land, or are simply very aware and suffering, but wholly incapable of reacting and to it or communicating the fact due to their drugged up state.

 

At the end of it all, all that can really be proven is that the treatment has given the impression, even if it was no more than an illusion, that the victim has passed comfortably and peacefully. Which if true is all good, but without proof that that is definitely the case, it has as much to do with appeasing the sensibilities of the living than caring for the dying, and that is 100% wrong.

[as]

^

which is why making a DNACPR order and Living Will/ Advanced Directive while you are still mentally able is so important.