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Source: (consider it) Thread: The Liverpool Care Plan: A Good Death?
The Midge
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My mother died recently from Cancer. She was on the Liverpool Care Plan (LCP) for the last 4 or so days (or so I believe). The family was with her throughout. So all the recent controversy about this plan is rather close to home.

The LCP is being criticised for hastening death by withdrawing treatment. Some people accuse the NHS of doing this to save money.

Just to illustrate what the process is like I will outline what happened.

Mum had secondary cancer on her lungs and had to fight for every breath. She was being treated at home until she suddenly took a turn for the worse and was taken into hospital on instruction by the GP in consultation with a paramedic. I arrived at the hospital the next day, and my wife who is a nurse with some palliative care experience helped Dad/ Mum talk through the options with the palliative care team.

She didn’t have much in the way of treatment to withdraw. However she had hardly anything to drink in those last days ate when she felt like it. She did have pain control and other meds via syringe driver. This allowed a steady controlled dose of drugs without the peaks and troughs of tablets. I think the dose was about the same or raised slightly higher. She died after three days. She passed peacefully in the end and certainly knew we were keeping vigil.

So what do Shipmates think? Is it euthanasia by withdrawal or should there be a plan for stopping treatment?

How do we die well when medication can keep our body going long after nature would have taken its course?

Is there a better plan to replace the LCP or are some of the horror stories really about something that is the LCP in name only?

[ 13. July 2013, 20:37: Message edited by: The Midge ]

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Adeodatus
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I'm dismayed the LCP is being abolished. The idea of it was to ensure that proper palliative care was given to people in (roughly) the last 2 days of their life.

Almost always, that would involve discontinuing invasive procedures like taking regular blood samples at n-hourly intervals for testing.

Often it would involve withdrawing whatever attempts were still being made to cure the person, especially where such treatments might have unpleasant side effects - chemotherapy, for example, which might have all sorts of side effects such as nausea and vomiting.

Sometimes it would involve disconnecting invasive technology. Sometimes, too, it would involve having a conversation with the patient or their family about whether it would be appropriate to attempt resuscitation in the event of a cardiac arrest.

Rarely, it would involve withdrawing artificial feeding and hydration, where there was a clear indication that the dying body was no longer processing food: in those circumstances, continuing to feed the person may cause extreme discomfort and pain.

Always, it would involve appropriate palliation of symptoms, particularly pain.

Always, always, at every stage it should have involved conversations with the patient or their family about what options were best, and why. It's mostly because so many nurses and doctors are so bloody scared even to mention death, let alone have these conversations, that the LCP has gone so wrong in so many places. My opinion of such doctors and nurses is, I'm afraid, more hellish than purgatorial.

So what now? A return to the time - not that long ago, within the lifetime of my own ministry - when the dying were an embarrassment, consigned to die in pain and confusion because it was possible for doctors merely to wash their hands of them? That's exactly what the LCP was supposed to abolish.

So, well done, you front line staff who daren't even mention the word "death". Thanks largely to your wussing-out, we're losing the one safeguard we currently have that a person's dignity will be respected in their last days of life.

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Jigsaw
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What Adeodatus said. He/she knows, as a hospital chaplain, what the situation is. I think I do too, as a former palliative care nurse.
The LCP, if - and it's a big if - properly understood and implemented - brings peace and calm and symptom control, and cares for the relatives and friends. It's not a "one-size fits all"; it's truly individualised care. The decision to scrap it is a knee-jerk reaction prompted in part by the Daily Mail's sensationalist coverage.
I fear for our dying patients now that the LCP is being withdrawn.

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JoannaP
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quote:
Originally posted by Jigsaw:
The LCP, if - and it's a big if - properly understood and implemented - brings peace and calm and symptom control, and cares for the relatives and friends. It's not a "one-size fits all"; it's truly individualised care.

That's certainly the impression I have gained from the news stories I read over the past couple of days, as somebody who has no relevant experience. There is no problem with the Pathway itself but some people are not implementing it properly.

IMHO surely the correct thing to do would be to provide proper training to all involved. I am not sure that there could be anything "simpler" (presumably i.e. cheaper than providing the training) which would work as well, which seems to be what the Powers That Be want.

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Meerkat

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My FIL (and to some extent my own father) was on the LCP for his last few days when it was obvious that there was nothing more the Hospital could do for him.

The nursing staff and others talked it through with us... by that stage he was in no fit state to discuss anything... and we agreed that it was the best option. They kept him mostly pain-free with the syringe-pump mentioned upthread; he was minimally hydrated but had no nourishment. He slipped away after a few days.

The staff were caring at all times and let us visit (within reason) whenever we liked. My wife has visited the ward on the anniversaries of his death and the staff still take a minute or two to chat to her.

I think we could say that 'it worked for us' and was handled well.

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Simples!

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Erroneous Monk
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Done properly, LCP is not euthanasia - it is good palliative care.

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And I shot a man in Tesco, just to watch him die.

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Enoch
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I'm no expert in this, but I can't help suspecting that this was, and is, in the right place and hands an excellent idea. But it seems to have been grabbed and misused by the worst sort of administrators and ward staff who turned it into a tool they could use as an excuse to 'manage' bed-blocking by the dying.

Leave out core concepts like 'care' and 'compassion' and that is what comes naturally to the administrative mind.

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L'organist
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My aged in-law was put onto the LCP but we only discovered this by reading the notes when they were left on the bed - there was no discussion at any stage.

It was during a heatwave: they were conscious for the first 36 hours and repeatedly asked for a drink but were denied. When partner supplied a drink it was spotted and we were given a dressing-down in the middle of the ward, complete with the 'explanation' "you're only delaying the inevitable" - very caring and compassionate, bearing in mind the patient was conscious, holding own drink and sipping quite happily.

We were so appalled we appealed to family doctor (thank God, a friend) who arranged for aged in-law to be sent home pronto. With care from us and home-help they recovered sufficiently to have another 12 months of useful AND ENJOYABLE life, including being able to grow own runner beans, etc.

So tell me the original decision to put onto the LCP was correct... [Mad]

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Rara temporum felicitate ubi sentire quae velis et quae sentias dicere licet

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Erroneous Monk
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quote:
Originally posted by L'organist:
My aged in-law was put onto the LCP but we only discovered this by reading the notes when they were left on the bed - there was no discussion at any stage.

It was during a heatwave: they were conscious for the first 36 hours and repeatedly asked for a drink but were denied. When partner supplied a drink it was spotted and we were given a dressing-down in the middle of the ward, complete with the 'explanation' "you're only delaying the inevitable" - very caring and compassionate, bearing in mind the patient was conscious, holding own drink and sipping quite happily.

We were so appalled we appealed to family doctor (thank God, a friend) who arranged for aged in-law to be sent home pronto. With care from us and home-help they recovered sufficiently to have another 12 months of useful AND ENJOYABLE life, including being able to grow own runner beans, etc.

So tell me the original decision to put onto the LCP was correct... [Mad]

That sounds terrible. However, applied properly, LCP should allow for a patient to be both put on, and *taken off* if their condition changes. It's not an irreversible decision, which seems to have been one of the misunderstandings on the part of the staff you're describing [Frown]

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And I shot a man in Tesco, just to watch him die.

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Galilit
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A friend's brother (suffering some combination of drug and alcohol abuse come to the end of the line) was on this plan and my friend said the whole journey was full of sensitivity, care and constant communication with one nurse/carer.

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Horatio Harumph
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I'm really sorry to the people who have had negative experiences of the LCP.

I do not deny that these experiences exist, and that they are incredibly painful and poor practice for the patient, and the family.

I would attribute this to the LCP not being facilitated and implemented correctly, whether its from the very start in terms of whether it should have even put it/kept in place or to how it was then used/followed through. I would not blame the Liverpool Care Pathway tool.

As a tool, if used and implemented properly, as it was and is intended then it is incredible in the work of supporting people as they die. And that is what it is for, people who ARE dying. For people who have already had many healthcare professionals agree that there is no more treatment to treat/improve/prolong life.

As has already been pointed out, it is possible and should happen that people, once on the LCP, if improvements are made, can come off it. I've seen that happen.

I think poor practice, and what I have read so far, would mostly seem to be in hospital practice should not mean that LCP should be abolished. I think poor practice and the abuse of it should be challenged and addressed.

I for one think that it is a sad day for patients and those who work tireless in end of life care to ensure the peace, comfort and pain free last days of those who are dying.

I speak from experience as someone who has worked in this area for several years (currently taking a break) and who has sat and held the hands of many people as they have died, some on and some not on the LCP. I've sat with many a family, and discussed LCP and seen people make decisions to use it, and to not. I've sat and cried with people as they have sat and cried, and with families as they have tried to determine what is best for their loved ones.

In all my time and experience of this work, and the LCP I have NEVER seen anyone 'starved' or 'dehydrated' to death. I've been entering into some lively conversations with people on twitter, one of whom decided I was evil and unchristian for being a part of this. The reason why he knows that is because he heard one or two bad experiences from people on a radio show phone in today on the topic. Sadly I think we will find the media, and a certain 'daily fail' have decided to grab hold of something, without really grasping the full picture, and are portraying something which actually has done a lot of good.

(edited to add, as well as my experience of LCP in a professional manner, I also saw my Gran pass away, on it. I spent the night with her in a hospital, cradling her head for hours as she screamed and cried in agony - it haunts me. The next day LCP was put in place, and she passed away 4 days later, pain free - I cannot tell you what that meant, to her and to us, to know she was not in pain)

[ 15. July 2013, 18:38: Message edited by: Horatio Harumph ]

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The Midge
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I know that the last stages are emotionally exhausting because I went through it with mum less than a month ago.

I think I am right in saying that next of kin are limited. In our case it was Dad (not us the children or my aunt). Discussions happen with the patient or their next of kin (if the patient is not able to make the decision themselves) then anyone one the patient invites into the discussion. So if other family are not asked to take part then they don't get much of a say. The patient still has a right to confidentiality. So members of the family could be close but not be involved in the decision to use the LCP or any other treatment for that matter. There is a lot going on so quite possible for some, who are not so clued up as I was, to not realise why decisions are made.

Perhaps protocols of informing relatives (not consulting- because that who imply they could change a decision) might be improved. I didn't see any literature (though they quickly produced a guide for what to do when a loved one passes on which was very helpful).

A knee jerk response or an over complicated plan will probably make suffering worse. I fear that it what we might get if politicians meddle. I broadly agree with the opinions that the plan is fine but there could be room for better implementation in some cases.

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Horatio Harumph
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I've blogged about this at :
http://fragmentz.org/2013/07/15/rip-liverpool-care-pathway/ …

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St Everild
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It seems to me that the problem is not the LCP, but in its implementation. And that is done by human beings.

I am glad where it has worked well, facilitating the very best end of life for the dying person and their families. But I have also hear of it being misused, to the point where I hold my husband that I was not under any circumstances to be placed on it without a full and complete discussion and with informed consent, as it seemed to me from listening to people's stories that it was indeed euthanasia by another name.

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Jigsaw
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I am so sorry to hear the experiences from Shipmates who found that the LCP was not what they or the dying person would have wanted. Sorry if that sounds a clumsy way of putting it. Reading peoples' experiences,(not just here but on other sites) it seems to me that major problems arise when a decision is taken "out of hours" by relatively junior staff to implement the LCP. And, apparently, no senior doctor or palliative care specialist has been available to advise.
I hope that the new individualised care programmes for palliative care recommended by Julia Neuberger will address this issue.

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Horatio Harumph
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I dont know about anyone else but I'm not overly confident we will see something 'better' being implemented any time soon, and there will be a massive gap once LCP is completely ended. I fear for the future of end of life care right now ...

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alienfromzog

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quote:
Originally posted by St Everild:
...as it seemed to me from listening to people's stories that it was indeed euthanasia by another name.

No. It really isn't.

I am so frustrated by this report.

This is what I wrote 2 weeks ago. Am currently writing a follow-up.

Let's be clear on three things:

1) There is a problem of bad practice and particularly bad communication.
2) The evidence is that whilst this is serious and significant it is indeed a minority and the problem lies with the practice and not with the LCP. (If you don't believe me on this point, read the review.)
3) All of the things people are calling for...individualised care plans, communication and consent from the patient where applicable, patient autonomy where possible, good symptom control, senior clinicians making the decisions etc. etc. are ALL in the LCP. They are what it was designed to do. What it actually does when used properly.

[Mad] [Mad]

This is basically pandering to the Daily Mail and I cannot think of a worse way to run a healthcare system.

I promise you, it is bad practice that causes the problem. There was bad practice before the LCP existed, there will be bad practice after the LCP is gone. If you want to solve the problem deal with bad practice!!

LCP Marie Curie Example Core Document

Please show what's wrong with it? Where it is advocating cruelty? Where it is a form of euthanasia?

It really, really isn't.

AFZ

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Adeodatus
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quote:
Originally posted by alienfromzog:
I promise you, it is bad practice that causes the problem. There was bad practice before the LCP existed, there will be bad practice after the LCP is gone. If you want to solve the problem deal with bad practice!!

Absolutely, and I too am convinced that this is the problem. Basically, the NHS Doesn't Do Death, and it never has. Even today, doctors have it drummed into them all through their training that if the patient dies, they've failed - and, to some extent, the patient has failed! Until you get to a position where doctors and nurses are confident and comfortable talking about dying with patients and their friends and families, the LCP and whatever replaces it will fail, and continue to fail.

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"What is broken, repair with gold."

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Philip Charles

Ship's cutler
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We are fortunate to have a hospice here and I have visited people there over the years. The key advantage of a hospice is that it is separate from the local hospital. This enables the institution to have a culture which is appropriate for the needs of the dying, and all the staff, medical and others are part of this culture. The ethos is very different to that of the hospital and so it is unreasonable to expect staff to move easily between the two institutions. The care provided is excellent.
I remember pleasure one patient with a lively sense of humor and a grin on her face repeating the death jokes the staff had told her.

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The Midge
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quote:
Originally posted by Philip Charles:
We are fortunate to have a hospice here and I have visited people there over the years. The key advantage of a hospice is that it is separate from the local hospital. This enables the institution to have a culture which is appropriate for the needs of the dying, and all the staff, medical and others are part of this culture. The ethos is very different to that of the hospital and so it is unreasonable to expect staff to move easily between the two institutions. The care provided is excellent.
I remember pleasure one patient with a lively sense of humor and a grin on her face repeating the death jokes the staff had told her.

Unfortunately Mum didn't make the hospice. It was full and the palliative care nurse didn't think she would make the journey in any case. So we stayed on the admissions ward. Also there was only enough money to employ the palliative care nurse during office hours Mon-Fri. Which is crazy. People don't chose when to die!

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kingsfold

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I've experienced application of the LCP very recently too. Not however with someone suffering from cancer, but with someone in a coma having suffered a traumatic brain injury and subsequent cerebral haemorrhage. Neurosurgeons at two different hospitals agreed there was nothing they could do - the damage was too great - and the prognosis was that the patient was unlikely to survive. There would certainly be no meaningful recovery.

It took about a week and a half for my mother to die. We knew she was on the LCP; they told us her case would be reviewed; we saw doctors when the case had been reviewed and they explained what changes were being made to her care; we had no disagreement with the decisions that were being made.

But, dear God, it did seem to go on forever. And when that happens, you do start to wonder if it's the right thing (whilst at the same time being logically and rationally sure it is!)

Was it a Good Death? I don't know. Certainly she would not have wanted to be kept going whilst in a coma, and nor did we want that for her.

[ 16. July 2013, 21:27: Message edited by: kingsfold ]

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Horatio Harumph
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I think one of the most common misunderstandings, especially from conversations I've been engaged with in the last 24 hours, on twitter, is that the LCP is about ending life. IT ISNT.

Its about ensuring that a life that is already in end stages is able to end with as much dignity as possible, as pain free as possible, and as comfortable as possible. Is that not what all of us want?

The fact that sometimes people who are on the LCP dont pass away within days is not the fault of the pathway.

Someone suggested to me that the LCP is flawed because their loved one took weeks to pass away after being commenced on it. The fact that she was comfortable and pain free seems irrelevant, BUT that is what LCP is, supporting and caring for an already dying person, NOT helping a person to die.

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kingsfold

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I recognise that there are misunderstandings about what the LCP is and what is for. And I if I gave the impression that I misunderstood and was criticising its use, then I'm sorry. Mum's death is relatively recent and still raw, and in my desire to be measured I may have been oblique.

I also understand that death is a process that can and does take time. And I'm OK with that too. But emotions being what they are, you can still rationally understand all this and agree with it, whilst still being worried that you are in some way doing the wrong thing/hastening death etc. Which is an uncomfortable thought at a time like that!

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Horatio Harumph
Shipmate
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Kingsfold, I understand that, and I'm sorry if I came across harshly or anything other than sympathetic for your loss.

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alienfromzog

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quote:
Originally posted by kingsfold:
I recognise that there are misunderstandings about what the LCP is and what is for. And I if I gave the impression that I misunderstood and was criticising its use, then I'm sorry. Mum's death is relatively recent and still raw, and in my desire to be measured I may have been oblique.

I also understand that death is a process that can and does take time. And I'm OK with that too. But emotions being what they are, you can still rationally understand all this and agree with it, whilst still being worried that you are in some way doing the wrong thing/hastening death etc. Which is an uncomfortable thought at a time like that!

Kingsfold, this is why the Mail's campaign against the LCP is so malevolent. Whether consciously or inadvertently, the anti-LCP articles and comment pieces have inevitably tapped into such raw emotions. My mother died 18 years ago and I remember for a long time wondering about what I might have done differently - I wasn't there when she died and that was my fault. I never really prayed for healing because I didn't believe that was God's plan; maybe I should have?

The LCP is to my mind overly administrative and has too many bits of paper to it but it does consolidate best practice in palliative care. I am deeply angered that the government report has pandered to the Daily Mail and I worry that we will see a huge backward step in the way we care for dying patients in hospitals. I pray that I'm wrong.

If anyone's interested here are some more detailed thoughts: Angrymob article

AFZ

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Thurible
Shipmate
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My wife's grandfather was put on the LCP in his final days. It was probably the right decision. He'd had Alzheimer's for several years and so was in position to discuss it with the medical staff. Our problem, though, was that they discussed it with Grandma who, whilst with it, was 85, hot, stressed, tired, and confused - and had no idea of the implications. Indeed, it wasn't til after he died that we worked out what had happened.

So, as with so many things, the idea's fine but the implementation has probably lacked something on a number of occasions.

Should it be banned, though? I cannot see why it should be.

Thurible

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"I've been baptised not lobotomised."

Posts: 8049 | Registered: Aug 2002  |  IP: Logged
Alisdair
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# 15837

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On the face of it this whole situation is a classic example of politicians bandwaggoning on something they are ill qualified to pass judgement on, but which gains them short term brownie points and media exposure for being 'seen to be doing something'.

All they are actually doing is 'changing the name' on the tin, but bad practice and good practice will remain the same as they always have done. The 'LCP' set out guidelines for good practice and there is little there to be argued with, allowing for the fact that the state of the art in care for the dying does tend to move on, both in fashion and in technical/pastoral understanding.

As others have already said, whatever name 'they' come up with next, the principles and practices set out will almost certainly be little different to what is contained in the LCP. The question is: will hospitals, staff, and families be enabled to put those practices into proper and compassionate action?

We may not see many politicians taking any active interest in that long and difficult road that sees human nature, habits, ignorance, and fear being changed for the better.

Posts: 334 | From: Washed up in England | Registered: Aug 2010  |  IP: Logged


 
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