Andrew Peach, 30 January, speaks to Norma (Berkshire widow recently in the news), Dr Tim Harlow,
taking calls from public, Shaun Lintern a Medical Journalist
and Helen McKenzie Director of Nursing. Listen from 7 mins to 19
mins. Then from 37 mins to 45 mins, then 1hr 7 mins to 1hr 25 mins,
then 1hr 35 mins to 1hr 44 mins, then 1hr 51 mins to 1hr 55 mins, then 2hrs 6
mins to 2hrs 18 mins, then 2hrs 37 mins to 2hrs 45mins, then 2hrs 49 mins to
2hrs 55 mins, then 2hrs 56 mins to 2hrs 58 mins
30/01/2013
Quote of Note:
"...if the nurses have the right to start this without the family and the wife knowing, I think it's jolly well disgusting. I don't think it should be allowed. Who are they, the nurses to decide when somebody is going to finish their life? If they're terminally ill, you might know a bit better, but it could be next week, the week after, but nobody knows that and I defy them to tell me they do."
"They put them on a conveyor belt. Their feelings are not considered, neither is the wife's feelings considered, or the family's."
"I'm angry because they got so much power... And for somebody to have that power over life and death, to me, is the most terrible thing and it reminds me of the war days. It's against Christianity, it's against any civilised thing that I've ever known in this country, civilisation."
"what sometimes seems to happen is that people go into hospital, who are unwell, you know, not got years left, but are living perfectly happily at home; they get what seems like a minor complaint, you know, a rash or something like that, they go into hospital
and then the doctors and nurses take over. And they're making all the decisions. and they're saying, oh, this person's near the end of their life."
Misdiagnosis...
"My father was misdiagnosed - he was severely disabled - but he didn't have a terminal condition."
Hospital acquired infections...
"this is a similar sort of thing whereby, you know, someone is not very well but being looked after at home and ends up in hospital for a very small thing."
"My husband went into Frimley Park Hospital for an operation and unfortunately developed peritonitis."
"my sister was 59 years of age. and she had a stroke, so she was sent to a rehabilitation stroke unit. Unfortunately after a week or so there, she got a chest infection."
"To be honest with you, we've been left with a great deal of guilt. We feel that they did it under our very noses and we didn't see it."
A " casual disregard and intolerance of old people, elderly people in NHS hospitals."
"somebody even turned round and said why don't you just let her go because she's 93... and you think, well that's beside the point."
"And he actually told us that, you know,that really and truly my mother would have been nearing the end of her life. And at the age of 91, you know, how much longer can a person go on for?"
Of Gods and Men...
"...do doctors and nurses get their way?"
"Certainly. Dad died."
"doctors have the legal right and the power to make a decision in the best interests of their patient..."
"when I got in, I looked at her chart and she hadn't had - she was a diabetic and she hadn't had her insulin. And I said, why have you not had your insulin? And she said, I don't know. They just haven't given it me."
"Yes, exactly, because unless someone is then fed and given something to drink artificially, they're gonna die."
"Yes. Yes. But it is a dignified death."
"my view of the LCP is that it's nothing more than a legalised version of euthanasia."
"...it's no different to these people who take their family members to Switzerland or wherever it is and, you know, and giving them a lethal injection or allowing them to die in that way."
"I, I think the principle is not much different."
TRANSCRIPTION FOLLOWS -
Andrew -
We're talking about a controversial measure that's used when people are ill in hospital and getting to the end of their life. It's called the Liverpool Care Pathway. I suspect a lot of people listening have never heard this term. I certainly hadn't until a couple of days ago. What it means is that doctors and nurses can make decisions to make a patient more comfortable in the final days of their life by stopping medication as patients become weaker and don't want to eat. It also can mean stopping food and drink.
Let's meet Norma. I went to see Norma at home yesterday in Newbury.Norma's husband Leslie passed away in November. He had been ill and at the end of his life he was in the West Berkshire Community Hospital. Norma is really angry that he was put on the Liverpool Care Pathway without her even knowing about it. She told me more about how sick her husband was in his final months.
Norma -
he did have arthritis quite a lot all over his body and in his feet but he also became very frail. I had to bring his bed down here, his commode beside him, but Leslie was a very independent man. he hated the thought about going into hospital and being put into a cot bed even though they insisted in case he falls but to be put into a cot bed to him was to lose his freedom.
Andrew -
The sense I've got from just, you know, watching you talk about him, Norma, is that, you know, even in the difficult, final few months, I imagine you had quite a good time together, didn't you?
Norma -
We did... We did. There was lots of laughs in here and jokes, especially with his carers. He loved his carers and they loved him.
Andrew -
What's interesting about the story is that you guys were still planning for the future. You were planning Leslie's birthday...
Norma -
Yes.
Andrew -
You were planning for Christmas. So, you were both very positive and focussed on, you know, getting better and, you know, things still to come, weren't you?
Norma -
Well, I wasn't focussed on him getting better because I knew he wouldn't get better but, whether Leslie got better or not, we were always positive. Every day we wake up, we were happy. I used to come down the stairs singing and he'd say, darling, give me a kiss. And that's how my life was, full of happiness.
Andrew -
Did you guys think about, even talk about the fact that you were nearing the end of Leslie's life?
Norma -
Yes. And he told me he wanted to die in his own home. he was looking forward to his birthday and to being with me at Christmas. We were so close, as soul mates, that to part from me would have broke his heart.
Andrew -
Now, after being admitted to hospital, Norma said the the nurses did stop feeding Leslie, stop giving him his medication, and then without her knowing started giving him morphine injections.
Norma -
My legs wouldn't move. I was shocked in horror, because I knew then what had happened. So, if the nurses have the right to start this without the family and the wife knowing, I think it's jolly well disgusting. I don't think it should be allowed. Who are they, the nurses to decide when somebody is going to finish their life? If they're terminally ill, you might know a bit better, but it could be next week, the week after, but nobody knows that and I defy them to tell me they do.
Andrew -
So, when you found out the nurses and the doctor were taking this view of the situation, administering morphine to your husband, what did you do?
Norma -
I shot over there in a taxi and I think they'd given him another dose because he'd laid in the bed... stoned. He couldn't talk, his eyes were rolling, he looked absolutely awful.
Andrew -
And, and what conversation did you have with the staff there about the situation, Norma?
Norma -
I was so depressed because I knew I couldn't do anything. I knew... What could I do?
Andrew -
Were they interested in your view of the situation? Did they want to talk to you?
Norma -
No, they didn't talk to me, they didn't come and say, you know, how do you feel about this, or do you know what's happened. Nobody spoke to me or gave me a leaflet about this; there are leaflets, I'm told, but I've never seen one. When I came in that ward, right from the beginning, I wasn't given a leaflet, I wasn't told my husband was going to be on the Pathway, until they gave him the injection. And they told me over the phone, which I think is all wrong, by a strange doctor that I didn't even know. The sad thing for me was that, even on his birthday, we had to sit him, lay him in bed and he couldn't talk to us. I tried to lift his head to get a drink in him and he couldn't swallow it because they'd give him so much morphine his mouth wouldn't hardly open to get a drink down. The sad thing was he died Friday morning and they gave him... somebody got there before me, a man from the Legion who was a friend of his, and he saw two more injections going in him. And Leslie just gave him a smile. And that was the end of his life. I wasn't told early enough to get there so I could've talked to my husband before his death, if he had of been talking. It was like, to me, they put them... they're too needle-happy. They put them on a conveyor belt. Their feelings are not considered, neither is the wife's feelings considered, or the family's. I had no chance to get his children from Canada over here, and they did it all the week without any consideration whatsoever.
Andrew -
Norma Weaver speaking to me at her home in Newbury yesterday. We were both in tears by the end of that it was time to go. She's a really lovely woman. I'm going to talk a bit more about Norma's story on the show this morning. What do you make of it? I wonder who you think should be in charge of the decisions about someone's medical treatment, healthcare at the end of their life? I wonder if you have been in a similar situation as Norma? My number's 0845 900 1041. The Berkshire NHS Healthcare Foundation Trust say they want to offer their deepest sympathy to Norma Weaver for her loss. They're aware of her concerns which they're looking into. But patient confidentiality means they can't comment on the radio about cases like this.
They say when a patient is close to the end of their life, they follow rigorous standards on how they care for the patient and how they communicate with them and their families. Their priority is to provide the best quality of care at the end of a patient's life, and to ensure the patient is as comfortable as possible at that stage. Measures may include discontinuing unnecessary medication and providing pain relief if that is in the patient's best interests.
Your view welcome. My number 0845 900 1041. Dr. Tim Harlow, consultant in palliative care, and chairman of the ethics committee at the Association of Palliative Medicine is on the line. Hello Tim.
Dr. Tim Harlow -
Good morning, Andrew.
Andrew -
What is the Pathway? Because Norma didn't know about it. I didn't know about it. It seems like quite a big deal if it could mean a change in when someone dies. So what do you care of that?
Dr. Tim Harlow -
The Liverpool Care Pathway was first developed in the 1990s and has been in widespread use since about 2001. It's a clinical guideline to help doctors, nurses, to give the best care to patients near the end of their lives who have been diagnosed as dying. One of the key points I think is that communication is embedded in it. Its now in its twelfth version. Each time the people who invented this keep looking at it, keep checking to make sure if there's anything from the feedback to make it better and one of the things that is really emphasised is about communication, making sure that the patient is feeling well enough but certainly the relatives are communicated with and do know what's happening and...
Andrew -
So the principle - sorry to interrupt you - but the principle is about not keeping someone... medically alive, you know... beyond the point at which that's a pleasant and comfortable experience for them. I don't know how to best express it, but that's what this is about, isn't it?
Dr. Tim Harlow -
It's not about either shortening people's lives artificially, or artificially prolonging them. It's only used, should only be used, when the whole multidisciplinary team looking after the patient are as sure, as sure as they can be - no-one can be 100% sure - that that person is now dying and there are no reversible causes for that persons decline.
Andrew -
Now if the doctors and nurses have taken that view, do they take account of what the patient themselves says or would have wanted? Do they take account of what the patient's partner and family believe about the situation? Because that appears to be what's not happened here.
Dr. Tim Harlow -
Yeah, I was really sad to hear Norma's case because there were clearly... they knew he was really frail, they both knew that he was very poorly, but they were still planning for the future, so it was all positive... and to have what's always going to be a horrible and difficult time for someone dying, to have that... with all this, this anger and fear and worry that she feels now, it's ... I was very sad to hear that.
Andrew -
Right, I mean... What we've heard, and we've only heard Norma's side of the story along with the statement from the relevant bit of the NHS is not the Pathway being implemented as it should be from the way you've described it
Dr. Tim Harlow -
Well, I'm not going to comment on an individual case for just the reasons you've talked about. But I think it is clear that important always for the LCP, the Liverpool Care Pathway, is good communication..
Andrew -
Who has the last say?
Dr. Tim Harlow -
Well, with any treatment, it is always good practice - the General Medical Council - the ethics advice is that relatives, next of kin, friends, must be consulted if that is possible.
Andrew -
But... I mean in this case it was possible - it may not often be possible - but it may be that the family and the doctors can't reach agreement about the best way forward. If that's the case, who decides, Tim?
Dr. Tim Harlow -
If things get to the stage where, I mean, let's say the relatives are... sometimes we have relatives who are disagreeing - there are family feuds, for instance... these are rare occasions, but they do happen - or people are just not available... in which case, we... it is up to the clinicians responsible to do what they feel is the best thing for that patient. Now, the Liverpool Care Pathway is not prescripted, it's not saying you must stop things, you must stop food and drink. if the patient is able to take that, that's fine. Very often, as people are getting near the end of their lives, their body chemistry is winding down anyway and, actually, their desire for food and drink is greatly reduced...
Andrew -
Sure
Dr. Tim Harlow -
and sometimes it can be quite hard to have that forced on them when they don't want that any longer.
Andrew -
Right, Tim, thanks very much indeed for explaining it on the show.
What do you make of this? I wonder if you've been in a similar situation and you may feel that you lost a relative and the Pathway was just the best thing the best way for managing the end of their life? You might be cross like Norma. You might have a view about who should decide what happens in this sort of situation - the family or the doctors? My number is 0845 900 1041.
......................................................................................
Andrew -
Here's Jackie, good morning Jackie.
Jackie -
Oh, good morning.
Andrew -
So, today we're talking about the Liverpool Pathway. We're telling Norma's story, Norma really cross that her late husband was put on this pathway and that food and drink were withheld, medication was stopped without anyone consulting her. What happened in your family, Jackie?
Jackie -
Well, I wanted to ring to say Norma's case isn't an isolated incident. My father was misdiagnosed - he was severely disabled - but he didn't have a terminal condition. He lived with us at home. He got a bladder infection, went into hospital, but no urgency was put behind diagnosing his bad chest.
Andrew -
Right. I feel this is a similar sort of thing whereby, you know, someone is not very well but being looked after at home and ends up in hospital for a very small thing.
Jackie -
That's right. And in his case they wouldn't feed him because they said they wanted to... First of all, they had to be sure what was wrong with him. They refused to do a CT scan. We pleaded with the doctors to do one. We had the consultant brought down to his bedside and the surgical registrar. They said, oh we haven't spoke to the radiologist yet but, in the meantime, dad was getting worse. They wouldn't feed him. Eventually, we were called in. They said, we're not going to do a CT scan because he's got a perforation. We said, well er - a bowel perforation - We pointed out that that was highly unlikely because he didn't have the symptoms of a bowel perforation.
Andrew -
Well... Were they listening to you? Did you feel that you were part of making decisions about dad with the doctors and nurses?
Jackie -
The point I'm making is that what happened to Norma, what happened to us, is symptomatic of what I'd call casual disregard and intolerance of old people, elderly people in NHS hospitals.
Andrew -
Do you think then the doctors and nurses were listening to what you wanted to happen?
Jackie -
Oh no, not at all, they totally disagreed and then three hours later...
Andrew -
They're allowed to disagree, but I'm just interested to know when the family and doctors and nurses don't agree about what needs to happen, you know, do doctors and nurses get their way?
Jackie -
Certainly. Dad died. Three hours after he died, I had a phone call from the consultant who said there would have to be post mortem because em she hadn't got enough details of his condition to go on the death certificate. And at the post mortem, it was found that he didn't have a perforation at all. he actually had a pulmonary embolism, which is a blood clot, which is a treatable condition.
Andrew -
Mmm... And how, I mean, how do you feel about what's happened? You know, clearly, like Norma, you're grieving, you've lost someone very, very important to you. How do you feel about the end of your dad's life, Jackie?
Jackie -
Well... very angry, very bitter and we have no closure. The important thing and the reason I'm ringing you now is to try and make sure that this sort of thing doesn't happen to anyone else.
Andrew -
Okay, Jackie, thankyou very much indeed. I'd like to hear from you if you had the same sort of experience as Norma and Jackie. I'd like to know if you've had a loved one on the Liverpool Pathway and you've been really happy with it. Who should make the decisions about the end of someone's life - the medics, or the family?
Shaun Lintern is from the Nursing Times. Hi Shaun.
Shaun Lintern -
Hello Andrew.
Andrew -
Heartbreaking stuff this. I mean, How common do you think it is that people are put on the Liverpool Pathway without their family even knowing, certainly without the family even agreeing with it?
Shaun Lintern -
Well, er, I think it's fair to say that when you look at the figures for people who die in hospital, I think it's well over 55% of the deaths that occur in hospital, but the numbers that are put on the LCP are probably quite small. The National Care of the Dying Audit which looks at over 150 hospitals and looks at the way patients die and how they were cared for, that audit showed that, in most cases, 97% of families were aware that the patients were dying and that the LCP was being used. and I think, if I could, I'd like to give you...
Andrew -
Does that mean agreeing with it, though? Because Jackie who we just heard from, she knew that the Pathway was being used, but she didn't endorse that decision, she didn't want it to be the case, she just couldn't do anything about it.
Shaun Lintern -
Well, er, I think it's fair to say that the LCP does make it clear that doctors should consult with families... it involves...
Andrew -
What... what does that mean Shaun - well, I'm sorry to interrupt - what does that mean? Because we've heard that phrase a few times this morning - Doctors should consult with families... what... and then, and then what, if people can't agree about what the right way forward is?
Shaun Lintern -
Well, it is a very difficult situation. None of us are in the position of a doctor who has the knowledge and the training, of course. I'm no defender of doctors and the Health Service. It's... there are problems and there are cases, unacceptable cases, where families have not been informed or told about the LCP, but I think it's fair to say that unless you have a power of attorney, I believe doctors have the legal right and the power to make a decision in the best interests of their patient...
Andrew -
Gotcha...
Shaun Lintern -
...and it may be that, for some patients who are dying, and it may be very difficult for families to accept that.
Andrew -
It might be the right thing. That's... if we should put that out there right now. It might be that the doctors can take a much more objective view and make the right decision for the patient where the family, with their emotional involvement, cannot do that.
Shaun Lintern -
Yes. Absolutely, and I think that one of the problems with the debate about that's been had about the Liverpool Care Pathway, it's been unfortunately skewed I think by some national newspapers, the daily mail in particular reported this quite badly, because it's not the LCP that is actually at fault. The LCP allows for people to have - if there is such a thing - a good and peaceful death. The problem is that in some isolated cases, staff at hospitals, doctors and nurses, have not implemented it properly.
Andrew -
Gotcha... Shaun, thankyou so much. Shaun Lintern from the Nursing Times.
......................................................................................
Andrew -
So, yesterday, I spent the day at Newbury with Norma. Norma is now a widow, and she says she didn't have time to say goodbye to her husband, to her Leslie, because of a controversial end of life treatment called the Liverpool Care Pathway that her husband was put on at the community hospital in Newbury. This is when medication and food, even water is withdrawn from someone who is dying. Norma told me that, at no point was she told this was the plan, at no point was she asked for her consent, at no point was she consulted about whether this was what Leslie would have wanted. She told me more about how she felt when she realised that her husband had been taken off his pills and was being given morphine.
Norma -
My legs wouldn't move. I was shocked in horror, because I knew then what had happened. So, if the nurses have the right to start this without the family and the wife knowing, I think it's jolly well disgusting. I don't think it should be allowed. Who are they, the nurses to decide when somebody is going to finish their life? If they're terminally ill, you might know a bit better, but it could be next week, the week after, but nobody knows that and I defy them to tell me they do.
Andrew -
So, when you found out the nurses and the doctor were taking this view of the situation, administering morphine to your husband, what did you do?
Norma -
I shot over there in a taxi and I think they'd given him another dose because he'd laid in the bed... stoned. He couldn't talk, his eyes were rolling, he looked absolutely awful.
Andrew -
And, and what conversation did you have with the staff there about the situation, Norma?
Norma -
I was so depressed because I knew I couldn't do anything. I knew... What could I do?
Andrew -
Were they interested in your view of the situation? Did they want to talk to you?
Norma -
No, they didn't talk to me, they didn't come and say, you know, how do you feel about this, or do you know what's happened. Nobody spoke to me or gave me a leaflet about this; there are leaflets, I'm told, but I've never seen one. When I came in that ward, right from the beginning, I wasn't given a leaflet, I wasn't told my husband was going to be on the Pathway, until they gave him the injection. And they told me over the phone, which I think is all wrong, by a strange doctor that I didn't even know. The sad thing for me was that, even on his birthday, we had to sit him, lay him in bed and he couldn't talk to us. I tried to lift his head to get a drink in him and he couldn't swallow it because they'd give him so much morphine his mouth wouldn't hardly open to get a drink down. The sad thing was he died Friday morning and they gave him... somebody got there before me, a man from the Legion who was a friend of his, and he saw two more injections going in him. And Leslie just gave him a smile. And that was the end of his life. I wasn't told early enough to get there so I could've talked to my husband before his death, if he had of been talking. It was like, to me, they put them... they're too needle-happy. They put them on a conveyor belt. Their feelings are not considered, neither is the wife's feelings considered, or the family's. I had no chance to get his children from Canada over here, and they did it all the week without any consideration whatsoever.
Andrew -
People will be able to hear how angry you are...
Norma -
Yes.
Andrew -
You're obviously grieving for the loss of your partner (talks over Norma...)
Norma -
Well, I'm angry because they got so much power... And for somebody to have that power over life and death, to me, is the most terrible thing and it reminds me of the war days. It's against Christianity, it's against any civilised thing that I've ever known in this country, civilisation.
Andrew -
So, you want the rules changed so that the nurses and doctors (talks over Norma...) and nurses in this situation have to do what?
Norma -
Not... Well not be able to have so much power that they don't include the wife and the family. You see, there should be somebody - if an old person hasn't got any family, then they should have their social worker or somebody there on their side to understand what they're signing for - because my husband wouldn't have understood what the Pathway was and nobody has had to account for it. None of the staff have had to account for it. And now we have it in Berkshire and I want it looked into.
Andrew -
What do you think about your husband. Tell me about the things that are in your mind. Moving away from the end of his life, let's talk about some of the time that you shared here.
Norma -
Leslie was a great person. He loved life. I know he would never wanted to die because he loved life, he would have fought it to the end.
Andrew -
What do you think he's saying to you now? Because he's (talks over Norma...) watching over us as we're having this conversation.
Norma -
I say, Leslie, I'm fighting for you, darling. Right. And I shall have this put right whatever if it takes me all my life, I will have this put right for Leslie.
Andrew -
Norma, who I met at home in Newbury yesterday.
Talk to Helen McKenzie Director of Nursing for Berkshire's healthcare NHS Foundation Trust which runs the community hospital in Newbury where Leslie was treated.
Morning Helen.
Helen McKenzie -
Morning Andrew.
Andrew -
What do you make of what you've just heard?
Helen McKenzie -
Er... Well, of course, when... when one of your loved ones is dying, of course its, its really hard, isn't it? And I absolutely can understand from Mrs Wheeler's point of view that, you know, it's really important that the doctors and nurses have conversations with their relatives. Em... You know, I'm absolutely here, and our heart goes out to her, doesn't it, when you hear her on the radio, absolutely how hard it is when you lose a very important person in your life?
Andrew -
Well... That's true. Em, but that's not how Norma sees it.
Helen McKenzie -
No, I...
Andrew -
Em... I put that to her repeatedly, I don't know if you heard it in the bit of the interview with Norma that we've been able to broadcast so far... but I did press her a little bit on whether, really, she's just angry because she's been bewreathed, because she's lost the love of her life and she's very determined to say it's not that. I fully accept that my husband was dying; I don't accept how the end of his life was managed by the folk at the hospital that you run, Helen.
Helen McKenzie -
Yeah, it's really hard for me to talk about a specific case, but if I talk about the Liverpool Care Pathway, and it's... it's an assessment tool that doctors and nurses use to understand when someone is near the end of their life. It's when they're in their last few days and hours... And it's really, really important that, as part of this assessment, they have a conversation with families and carers. But it's a really difficult conversation to have, isn't it Andrew?
Andrew -
Well, of course, yeah. I.. but from what we can tell, in this case, it didn't happen.
Helen McKenzie -
Well, I... I... It's really difficult for people when they're having a difficult conversation with doctors and nurses to hear what's being said. I think the point that Mrs Wheeler made at the end around perhaps having somebody else there to listen at the same time is, is, you know, a really valid point.
Andrew -
well, I... I mean, are you saying it did happen?
Helen McKenzie -
I... can't talk about...
Andrew -
Norma's forgotten it or...
Helen McKenzie -
I... I really can't talk about a specific case, but what I can say is when a patient is considered to, to be near the end of their life, a conversation should happen between doctors and nurses. I... I don't know the details in Mrs Wheeler's case and I obviously can't talk about those on the radio. Em., but, you know, the assessment tool enables a very comfortable, pain-free death with dignity. And actually I think that's what people want. Death is a part of life. It's inevitable for us all. And actually the Pathway... er came out of a hospice in Liverpool in 2001 and it became er, it was launched in the NHS as part of the end of life strategy in 2008. And it is about, you know, really making sure that the best possible care is given
Andrew -
I mean, of course, it has the best possible aims. No-one's going to doubt that and no-one's going to doubt that everyone involved in this and every case is doing their best to do the right thing' Of course, they are. but, if it's the last thing someone wants; if the person, the patient themselves made it really clear when they were able to communicate this was not something they would have wanted; when their families say this is absolutely not what we want, surely doctors and nurses don't just press ahead.
Helen McKenzie -
No...
Andrew -
And end someone's life?
Helen McKenzie -
A-a-absolutely not and, of course, the tool is about... it's not about ending someone's life; it's about enabling them to die with dignity. It's recognising that a person has entered the last few hours or days of their life.
Andrew -
Right. I mean in a couple... In this case we're talking about here and other stories we've heard on the show this morning,
Helen McKenzie -
Yeah...
Andrew -
what sometimes seems to happen is that people go into hospital, who are unwell, you know, not got years left, but are living perfectly happily at home; they get what seems like a minor complaint, you know, a rash or something like that, they go into hospital and then the doctors and nurses take over. And they're making all the decisions. and they're saying, oh, this person's near the end of their life.
Helen McKenzie -
I really, really don't think that's the case, Andrew. I really don't think that's the case.
Andrew -
I can't say it is or it isn't but it is the experience of listeners who have spoken on the show this morning.
Helen McKenzie -
Er is that... When you come into hospital, you - you know - unless you're coming in for planned surgery as such, you know, you're, you're admitted to hospital at a point where you must be quite poorly. You don't go into hospital for something really minor. You're going in for a particular reason. And in some cases, you know, the majority of people who come into hospital actually do go home. You know? So that we're thinking about those people that come into hospital and actually, they're, they're... for whatever reason they've come, and they start to get very poorly and actually their body, it... it starts to fail them... It's at that point that we may start to have conversations with families. It's about absolutely everybody is an individual. It's about assessing individuals for what they require. But, you know, we now have people coming into hospital, you know, saying who are well saying, I don't want to go on that Liverpool Care Pathway. And actually what we've got now is a public who are very scared and actually it's been much harder to ensure that we are able to give high quality care at the end of life.
Andrew -
Helen. I'm going to stop you. Thankyou so much for talking so honestly about where you're coming from because what I want to happen as a result of this morning's programme is that people will know about it, people get the term, people will have heard this term Liverpool Pathway so that if it's ever used people will know what it means and can think about it and explore it and find out more about it and all those kind of things so that we just know that it's something that's being used in the NHS.
Helen McKenzie -
Yes
Andrew -
Because I think a lot of people don't know. Within the NHS it's probably old news, but I think for a lot of people listening it isn't
Helen McKenzie -
No
Andrew -
Em, really, really useful, Helen, thanks ever so much.
Helen McKenzie -
Okay, thankyou.
Andrew -
Helen McKenzie who is actually Director of Nursing for Berkshire's healthcare NHS Foundation Trust.
I'd love to hear from you if you've had a relative on the Liverpool Care Pathway. I'd love to know if it was a fitting and dignified end to their life which is what it's supposed to be. I'd love to know if it didn't go so well. I'd like to know who you think should make the decisions about the end of someone's life. The doctors, or the family. My number's 0845 900 1041
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Andrew -
Good morning, Caroline.
Caroline -
Good morning.
Andrew -
Good morning, Gabriel.
Gabriel -
Good morning, Andrew
Andrew -
So, tell me about your experience of, em... how the death of a loved one, the end of a loved one's life was managed, especially if it involved this Liverpool Care Pathway. Caroline, you first, go on.
Caroline -
Em, mum was taken into hospital at the end of last year and my sister wanted to stay and she was told originally she couldn't because mum was on the ward. Then, miraculously they found a side ward and they said the only way that my sister could stay was if she agreed to the LCP. Well, reluctantly, we said okay, because, you know, my sister wanted to stay with her. Em, then we were told, because she was taken into a side ward, we shouldn't have had to agreed to it because she was a very ill lady. When we sort of carried on with it and everything else, em... and they said your mother will be taken care of and everything will be fine and you know everything else and nothing will change. Well it did, because, once you agree to the LCP Pathway you... take all rights away. Or they take all rights away. They don't do anything for the patient. They make sure she's comfortable or... and all that sort of thing, but they stop all ops, they stop all drips, they stop absolutely everything and they just keep the patient comfortable. And that's all literally that they do. If they've got a drip up, they wait till the drip's finished and they stop the drip. My mother was on oxygen which they carried on giving her, but everything else stopped. And my sister didn't see a member of staff for three hours, four hours a day. It wasn't until they came in and said oh we're going to turn your mum.
Andrew -
Now, did... You're explaining very articulately how it works. Did it.. Were you happy with it? As happy as you could be in the situation? Did you think it was a sensible way of managing the end of her life?
Caroline -
Em. At the time, we did, yeah. But when we found out that we didn't have to agree to this - the Pathway - we were really cross and angry because literally everything was taken away from her. Em, and we didn't need them to keep saying it's the best thing for your mum because she's an elderly lady. you know, somebody even turned round and said why don't you just let her go because she's 93... and you think, well that's beside the point. We know she's an elderly lady but you don't have to keep telling us. And she couldn't eat, she couldn't drink, and this was why the drip was up. And the nurses would keep going out and saying, oh she's in distress. Well, mum wasn't in distress. And that's the only time they would give other medication, if they thought that the patient was in distress.
Andrew -
Okay. Caroline, thankyou. Gabriel...
Gabriel -
Good morning, Andrew
Andrew -
You had your mum on the Liverpool Care Pathway as well, tell me about it.
Gabriel -
I did. She passed away on February 14th 2012. And I must say that the acute stroke unit at the Royal Berkshire Hospital are to be commended. The consultant there - the urology consultant - took myself and two brothers into a room to explain what was happening to my mother. She was suffering from a series of mini strokes. And he actually told us that, you know,that really and truly my mother would have been nearing the end of her life. And at the age of 91, you know, how much longer can a person go on for? But I must say although it works for us and we accepted it as a family there are bound to be cases where the LCP will fail miserably as I've heard this morning.
Andrew -
Mmm, mmm
Gabriel -
I must pass my condolences to Norma and Jackie...
Andrew -
Well... what do you sort of want, though, if the Pathway isn't what the person would have wanted themselves or not what the family want... Therefore is it necessary in every case, I don't know.
Gabriel -
Well, I take the view, em, Andrew that my mother was 91, we sort of like her with us today, but the fact is she was 91, how much longer must a person... can a person go on for? She was... She passed away peacefully... I can only say, you know, what happened to our family. Em... my mother passed away peacefully and with dignity in the stroke unit and we... we as a family accepted it because my mother had a series of mini-strokes... She wasn't going to get over it. They removed hydration from her, although my sister, Lucien in Newbury and Rosie from Solihull came down and stayed throughout 24 hours with her; we were allowed to stay with my mother. They moisted my mother's lips and, er, hydration was taken away from her... But, you know, it worked for us. And I can't say it would work for everybody, but this is my experience as a family.
Andrew -
Sure, Gabriel... Linda.
Linda -
Ah, hello, good morning.
Andrew -
What happened with your husband?
Linda -
My husband went into Frimley Park Hospital for an operation and unfortunately developed peritonitis. I was called into the hospital and spoke to the doctors. I was told that they had decided that it was in my husband's best interests to withdraw treatment and just to keep him comfortable and pain free. Then I was given the choice - he could either go to a hospice, they could nurse him in the hospital, I could have him home. I chose to have him home. When I went to see my husband, he wasn't able to speak at that time and I said would you like to come home, and I had just a little nod from him. And I must say I cannot fault the care. They phoned the people who look after the equipment to get a special bed to come in for my husband and we have an L-shaped dining room come lounge and the dining area was converted into a bedroom. While I was waiting in the hospital, I had a phone call to say oh we're outside your house waiting to deliver your bed, where are you?
Andrew -
Right...
Linda -
I said, for goodness sake, please stay there...got home quickly. Em, my husband was... came home later that day. Unfortunately, he only lived another three days, but we had the district nurses, the Marie Curie who are end of life nurses, not just cancer. I had somebody come at night to sit with him, just for the three nights that he lived, and I just cannot fault the care.
Andrew -
I mean again, a lot of people have a thing, understandably about wanting to die at home
Linda -
Yes
Andrew -
And if the end of someone's life is being managed in such a way that makes that possible, that means you can see people, people can see you, you've got your Perry Como records playing or whatever it is, then that's perfect, isn't it? Everything about Norma's story is exactly the opposite. here's a man who desperately wanted to die at home and then couldn't.
Linda -
Yes, very..for her... but em I mean the family came round, we didn't keep quiet because obviously we were in the other part of the room. And we chatted and the television was on. And I went up to him, although he couldn't answer me back. I did say to him, "You're home now, you're with me, you wanted that didn't you?" And I had another little nod from him and that was his last communication with me. But I did say to him, because I knew he could hear me, I said, "Oh, I'd read the paper to you if it wasn't such a load of old rubbish."
Andrew -
Laughs
Linda -
...like that, you know, we just carried on and, unfortunately, he just passed away in the night, I'd just gone to bed, I was so sad about that. He had this young lady there and she just came and got me. I cannot fault the care we had... It was just so wonderful. Every time the district nurse or the Marie Curie nurse we saw their car coming... And the care, it wasn't just for my husband, it was for us as well. It was absolutely wonderful, if a time like that can be wonderful.
Andrew -
Linda, it was good of you to talk on the show about it. I'd love to hear from you about the end of someone's life, that's what we're talking about, the end of a loved one's life, and whether it involved the pathway, whether that worked well. Who should make the decisions about someone, because it's fair enough to say doctors and nurses can make far more objective an assessment of whether - I don't know how to put it in a nicer way - if there's any point in someone staying alive any longer.Who should be in charge of deciding how someone's life comes to an end? What's your experience of all this. My number is 0845 900 1041. So grateful for your calls this morning. Please keep them coming.
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Andrew -
Here's Ruth. Hi, Ruth.
Ruth -
Hi, Peachy.
Andrew -
Good morning to you, so we're talking about the Care Pathway, the Liverpool Care Pathway this morning which is used to manage the end of people's lives asking for you experience, asking who should make the decisions. Tell me
Ruth -
Mum went on it two years ago and to be quite... it was pretty quick with mum. She went into hospital and we got told that she was due on the Liverpool Care Pathway. They explained it all to us, but what I found useful they gave us some leaflets so that we could actually read it and digest it. And they withdraw everything. They came every so often to wet mum's lips and they gave us a sponge to do that as well.
Andrew -
So they, so they, gave you a sponge to, so she could have a little drink.
Ruth -
Yeah I know... because she couldn't swallow
Andrew -
Yeah
Ruth -
it was a sponge and you just wetted her lips.
Andrew -
And... I mean, did you feel that it was the right thing when they explained it to you, they told you all about it, did you think, you know what, the last thing I want to do is lose my mum but actually it's time.
Ruth -
Yes. My mum had, she's had cancer, she had stroke, and she, I think she had been started the Liverpool Care Pathway before she went into hospital without us knowing... because...
Andrew -
She kind of signed up to it herself/
Ruth -
Yes. She started giving away her jewellery
Andrew -
Right.
Ruth -
And things like that. And it was only after she died that I realised that... that was what was happening. But the only upsetting thing we found was that after mum had died we got told to take her rings off her fingers because they can't guarantee their safety
Andrew -
Yeah.
Ruth -
And that was awful. But the Pathway was fantastic. And they left mum on the ward with us. And they just put the curtains round her. and I found that better than being in the room with her on our own.
Andrew -
Yeah. where you felt most comfortable...
Ruth-
Yeah.
Andrew -
So in your case and in your mum's case, we know what she wanted because she sort of volunteered and gone down that road herself and that I guess makes it a lot easier to compute for Norma who's absolutely certain it's not what her husband would have wanted. he'd have wanted to be at home; he'd have wanted to see his family; er, you know, he had religious beliefs he didn't want any sense of his life being ended, all these things meant that in their case it was a much less - happy is the wrong word - tranquil... experience? I don't know.
Ruth -
It's something that you can't change, either, because you basically the moments you got.
Andrew -
Ruth, thankyou very much indeed for contacting us this morning
Ruth -
Right, you're welcome.
Andrew -
Who should make the decisions about the end of someone's life - doctors or their family? 0845 900 1041.
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Andrew -
We've got Maureen. Hi, Maureen.
Maureen -
Hello. Good morning Andrew.
Andrew -
And we've got Abbie. Good morning, Abbie.
Abbie -
Good morning.
Andrew -
So, Maureen first. Tell me about your sister.
Maureen -
Well, my sister was 59 years of age. and she had a stroke, so she was sent to a rehabilitation stroke unit. Unfortunately after a week or so there, she got a chest infection. And so she was transferred to another hospital within the Trust. After being put on the acute medical, she made a really good recovery so we assumed that she would be sent back to the stroke unit. But they didn't; they transferred her onto another ward.
Andrew -
Right...
Maureen -
in that hospital
Andrew -
And I mean, at that point, you and the family must have had... your alarm bells ringing, to some extent, I mean you, you trust the medical staff to know what they're doing but
Maureen -
Absolutely.
Andrew -
But you're thinking, hang on a minute, why is she not going back to the stroke unit? What did they say?
Maureen -
Well we did actually ask for a meeting with several members of staff with a view to her going back to the stroke unit to continue her rehabilitation. We met with about six people around the bed. Em, they didn't want to hold the meeting in front of her but we insisted because my sister was compos mentis, she knew everything that was going on. So we had the meeting in the room and after a long discussion, they thought, yes, she would benefit greatly from going back and finishing her stint at the rehabilitation unit. That was on the Tuesday...
Andrew-
Yeah.
Maureen -
On the Wednesday, I called and said, you know, was the move imminent? It's nothing to do with us, call another department So I called the cab department and they said it's nothing to do with us, it's to do with the ward.
Andrew -
Right. And so it goes on... Let, let me move on to the point at which you found out that your sister had been put on the pathway in fact.
Maureen -
Well, we had gone into the... the nurses actually started... they obviously listened to us talking and they... my sister's grandson had a birthday on the 8th of June 2012, and so they were saying, oh you have a celebration coming next... Yes, yes. So, on the Friday, it was the only night because my niece had been staying with her. On the Friday, it was the only night she was left alone. And when I called, they said my sister had taken a turn. So we got up to the hospital on the Saturday morning and they said she wouldn't now be moved to the stroke rehabilitation, she had to stay there...
Andrew-
Right.
Maureen -
...until she made progress again. We had a meeting with them on the Tuesday and they said... We actually said we don't want her medication changing, we don't want anything changing.
Andrew-
And how did you find out that that indeed was happening?
Maureen -
Well, I went in and they had taken down her drip was the first thing. And I asked why have you taken down my sister's drip? And they said, well, she can drink a thousand mLs of liquid, so there's no need to have this. So I said, well I don't think she can. I mean, I'm a really fit person and even I struggle to drink a thousand mLs, because I'm not a great one for drink during the day. And then they started to remove other things.
Andrew -
Did they ever ask you about it?
Maureen -
No, no, they never discussed it. On the Wednesday, I'd gone in to see her and I'd been in to Marks and I'd bought some little for her, some little... and things. And when I got in, I looked at her chart and she hadn't had - she was a diabetic and she hadn't had her insulin. And I said, why have you not had your insulin? And she said, I don't know. They just haven't given it me.
Andrew -
Right. So, clearly by this point, she's being denied food and medicine. And how do you feel about it now, looking back on the end of your sister's life, Maureen? You sound pretty cross.
Maureen -
To be honest with you, we've been left with a great deal of guilt. We feel that they did it under our very noses and we didn't see it.
Andrew-
Right, okay Maureen... (speaks over Maureen)
Maureen -
.... nine years of age...
Andrew-
Let me stop you. I've got a lot of people waiting to talk...
Maureen -
Yes, of course.
Andrew -
I'm really, really grateful that you were willing to talk about your experiences this morning. thank you ever so much.
Maureen -
Okay. Thankyou.
Andrew -
Thankyou, Maureen.
Abbie?
Abbie -
Yes.
Andrew -
Em. Tell me your view as to who should make the decision. Em, you know, if someone is coming to the end of their life, who decides what happens in terms of their care?
Abbie - My view is probably going to put the cat amongst the pigeons somewhat.
Andrew -
No, go for it.
Abbie -
You spoke to my mother earlier, Caroline. Em, my grandmother was put on the LCP against the wishes of my aunt and my mother as you heard. And my view of the LCP is that it's nothing more than a legalised version of euthanasia. Because the way I see it is the doctors and nurses are there to help protect life. They're there to protect the sanctity of life by giving medication, by giving care in order to keep someone alive. By putting someone on the LCP and taking away any form of treatment, they are therefore basically turning round and saying well that person's okay to die. So it's no different to these people who take their family members to Switzerland or wherever it is and, you know, and giving them a lethal injection or allowing them to die in that way.
Andrew -
I, I think the principle is not much different.
Abbie -
No. In my view, the hospital that my nan was in made the decision to allow my grandmother to die.
Andrew -
Or, at least, not to do everything it could to keep her alive.
Abbie -
Yeah. And that makes me angry. The decision was taken away. yes, my nan was very ill. And yes my mum, my aunt, my dad, all of us, we didn't want to see my grandmother suffering any further, but we didn't want to see nurses and doctors making the decision to allow her to die for us.
Andrew - Do you think you ever would have made that decision as a family; can you ever as a family, say, we love this person, we want them to be with us but the last thing we want them to do is to die, but it's the best thing?
Abbie -
I think had it been done in a different way then we probably would have come to a similar, but there was no way that we would have done it in the way it was done by withdrawing all means of any, you know, all means of, not so much prolonging her life, but keeping her alive.
Andrew -
okay. Abbie, thankyou. Betty.
Betty -
Hi, Andrew.
Andrew -
Good morning to you. Good morning Jackie.
Jackie -
Morning
Andrew -
Morning to you. Betty first, then. Your husband died on the Liverpool Care Pathway.
Betty -
He... He did. But not necessarily so, because he was very ill and he had lost the ability to drink and to swallow which a lot of people don't understand happens when somebody is near the end of life and that's why the Liverpool Care Pathway comes into play.
Andrew -
Yes, exactly, because unless someone is then fed and given something to drink artificially, they're gonna die.
Betty -
Yes. Yes. But it is a dignified death. And a lot of people don't realise that when you are near the end of life, your organs are all failing and you're quite likely to suffer from a heart attack and then you have to make an alternative decision - Would you like your loved one to be resuscitated? And that to me is the most unpleasant, painful way to die, to actually be, em, have your chest pounded and maybe not survive anyhow.
Andrew -
This is a way of avoiding that.
Betty -
It is a way of avoiding it and I do believe that's why the LCP was introduced.
Andrew -
To what extent were you asked about it and asked about, you know, asked about what you thought was best?
Betty -
My husband's stay was in two different places. He was in a hospital before a hospice and the prognosis was not good and I asked what the alternative treatments were and there were none. I was told that, at that stage, the LCP would be introduced if I was willing to go along with that and I'd never even heard of it until My husband was ill. And then when he became desperately ill, I was asked if I would like him resuscitated and I said no after I had the explanation made as to what would happen and how undignified and unpleasant it is and not a very nice way to end your life.
Andrew -
What's good to hear is you're just clearly at peace with this whole thing. We've all got to feel for the people who have spoken this morning who are not at peace.
Betty -
What is the alternative? Have they considered that their loved one may suffer total organ failure, heart attack, have to be resuscitated, which is a very unpleasant way to end their life and the relatives may not be with the loved one at that stage anyhow.
Andrew -
Betty, thankyou. Jackie?
Jackie -
Em, yes.
Andrew -
Tell me about your husband.
Jackie -
He died in May 2008, so I don't know if the LCP was actually in place then, anyway.
Andrew -
Well, it's been around since the 90s, but it's being used in more and more places as I understand it.
Jackie -
Oh,right, yes. Well, when he went in he had Alzheimer's anyway. He had that for nine years. It was in the very late stages. he went in with yet another urinary infection. And when he went in that time, I said could they just not treat it because I felt he was in so much distress and anxious and, you know, every time and everything like that at home.
And I talked to the consultant and he said no they couldn't do that because it was tantamount to euthanasia and he was too young. Well I think, well I mean he was 72 and that is quite young these days, but, to me, age isn't the important thing, it's how my husband was suffering and, eventually, after three weeks, he was on a drip, he couldn't swallow, em, in fact the last memory I have of him really is his sitting in the hospital bed with his mouth open, a blob of ice cream on his tongue because he couldn't swallow it and... it was quite upsetting.
Andrew -
Yeah.
Jackie -
And. And, eventually, they got him on a drip and he started pulling it out, it obviously bothered him, and he kept pulling it out, and they did say to me then, do you mind if we leave it out? And I said no. And he just died in a couple of days. And I just feel that so much suffering could be avoided if they had only acceded to my request at the beginning. You know, obviously, I love him very much, I didn't want him to go, but I knew that he was never going to get better.
Andrew -
That he was going to go, so it was about, sort of choosing the best way for him and to a certain extent for the people around him as well, so that, you know, people are not left with this anguish and this discomfort that we've heard Norma and others verbalise this morning. Er, Jackie, thankyou.
Love to hear from you this morning. If you've got experience of the Pathway, either way, good or bad, who do you think should make the decision? At the end of your life, do you want doctors and nurses to check you out, have a look at you and think, they're not going to make it.You know, it's time to put them out of their misery. Or do you think it should be about the family thinking what you would have wanted. My numbe is 0845 900 1041. More of Norma's story to come between now and ten for you.
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Andrew -
Lesley, good morning.
Lesley -
Morning Andrew.
Andrew -
Morning to you, so we've been chatting since the start of this morning about the Liverpool Care Pathway which, I suspect, is a thing a lot of people had never heard of until they turned on the radio this morning. Em, tell me about you and your mum.
Lesley -
I would like my mum to go on the Liverpool Care Pathway. She has severe dementia and I have been told that she is in the last phase and is, effectively, dying. She is lying in a foetal position, she can barely swallow although they still continue to try to feed her, her blood pressure and temperature controls are up the chute. Yesterday, I was with her and she collapsed. And they have told me that they intend to treat her uncontrollable blood pressure, and treat her with antibiotics for the rattle in her chest. When I asked that they not do these things, because we have reached the end - there is nothing of my mother left - but I am not the next of kin, my step father is and he does not wish this to occur, and they also said that the Liverpool care pathway is something only done by a hospital and they cannot do this. They have to just make her comfortable and wait till the inevitable.
Andrew -
So...
Lesley -
So my view is that antibiotics and treatment of blood pressure are not the inevitable; they are prolonging what is, in effect, an extremely distressing situation
Andrew -
Mmm. And what's that all about, then? A different, you know, hospitals, different healthcare facilities take different views about this.
Lesley -
I don't know. She is seen by a geriatrician who visits the home that she is living in because she can do nothing for herself. Em, I find... I think that if she was transferred to hospital fairly quickly, a decision would be made to not prolong life, but I don't know whether it's because it is a care home, whether this...but a doctor could reach this decision and i would be in agreement with it. My stepfather is elderly and in ill health. I know he doesn't want his wife to die but, at the same time, she will never recover; there is nothing left.
Andrew -
Mmm, what comes through the situation you're describing is, you know, right now and what (Lesley interrupts) Everyone has such a different view about it don't they?
Lesley -
They do. I mean well I have power of attorney. I don't want my mum to die but I know there is nothing there left. She's not the mother I had and I think it's awful. I do understand that he cares for her but I just think that she should be allowed to go. And yesterday, I wished to her, mum, don't stay alive for us. Please go. You know, she has a Christian faith and I would say to her, you know, the time has come for you to go elsewhere and have your future life there, not here in this pain. you know, I... I mean, I'm not saying she's in pain, but she's grey and if you could see her, you would not like it.You wouldn't wish it on a worst animal..
Andrew -
What...
Lesley -
You would treat animals better than they're treating than my mum.
Andrew -
Is it something you've ever talked about with her?
Lesley -
She didn't accept that she had dementia. And, as a result, she would not take the tablets. She felt there was nothing wrong. By the time a diagnosis was finally made, em, it was too late really to do anything and, in the last year, she has deteriorated slowly, but in the last four weeks since before Christmas the deterioration has been quite remarked and now she's nursed in bed. Don't get me wrong. The care home are wonderful people and they do a wonderful job and she's looked after, she's clean, you know, there's nothing wrong with their care but I just feel that the doctors should say, don't treat her with antibiotics, we won't treat her blood pressure, we will let her go. But they seem to feel that they cannot do this. I don't know whether this is... whether they're worried about a reaction but, because I am not next of kin, although I can go and see her and they tell me what is happening, I am not able to make those decisions and I think that those decisions need to be made. We need now to say goodbye.
Andrew -
So, what's sort of ironic if you like about the thing is that it comes down to the same principle, that you want to be in control and everyone listening will hear the situation you're in and understand why and the reality you find is that the medics are in control.
Lesley -
Yes, I do find that...
Andrew -
In your case, they're saying, no, no, we're going to treat it.
Lesley -
Yes, well... When I suggested that perhaps the time had come not to do this, they looked at me as if I was suggesting murder. And I thought, we're not going to get better; this is... It's, it's... If somebody had had a stroke, and there was a chance of rehabilitation, I would take that with open arms; I don't want her to die, but I'm aware now she doesn't recognise me. Her eyes follow anyone in the room but there is no knowledge behind it; there is no thought process there anymore.
Andrew -
If there was, what do you think she'd make of the conversation that we're having now?
Lesley -
I think she'd be horrified. I think she would...
Andrew -
By... Which bit of it?
Lesley -
I think that she would not wish to be alive like it. She wouldn't. She just would not like to be what is, in effect, a vegetable in a bed.
Andrew -
Well, how did you... Well, you clearly feel very strongly about it and everyone can see that. What are you going to do next, Lesley?
Lesley -
I'm waiting to hear this morning. I have requested that they don't treat.I am waiting to hear whether her blood pressure has come back under control under her own steam. I'm hoping... I've made my wishes known, but that's all as far as I can do.I am not involved in the clinical process. I can only ask them but often they just say, well, a doctor has made a decision.Unfortunately, I do not have a very good relationship with my stepfather and so it is very difficult. Em, I understand how he feels; they have been married a very long time and he cares for her but I cannot see that what is there on that bed is now the person that he married and loved. And I think that it's a shame. I just think, you know... I'm just hoping she is listening to me and I'm praying every day that really and truthfully the end will come.
Andrew -
Yeah...
Lesley -
And that because I have a Christian faith, my wish that, you know, the end would come. I... I believe in the sanctity of life, I do. I believe in all the other bits and pieces, but I'm not so sure that I would want euthanasia. I feel that the time has come when there is no quality of life there anymore. Now, someone might say, how do you know? But she no longer recognises me. It's an automatic... It's an automatic reaction.
Andrew -
When it's your mum, you know.
Lesley -
Yes.
Andrew -
Em.
Lesley -
I... I'm just, you know, I'm just saddened that this happened. I mean, I do know that there are plenty of people out there who feel that the Liverpool Care Pathway is not the right thing for them and I think that each case...
Andrew -
You just wish it was an option.
Lesley -
should be taken on its merits.I wish it was an option here to allow her to go
Andrew -
I'm grateful you've talked about it, Lesley. Our love and thoughts are with you because everyone can, you know, hear the passion and the emotion in your voice and the situation you're going through. Look after yourself, won't you. Keep us in touch with what happens.
Lesley -
Thankyou.
Andrew -
Lesley in Finchampstead.
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Andrew -
Here's Heather. Good morning, Heather.
Heather -
Good morning, Andrew.
Andrew -
Good morning. A lot of talk this morning about the Liverpool Care Pathway which you have had experience of. Tell me.
Heather -
Unfortunately. My story - My mum lost her life in hospital four years ago. She went in for an operation on her back which she had waited a long time for in considerable pain. The operation went very well, but unfortunately the after care was not great, em, and it resulted in a devastating brain haemorrhage which, you know, really wiped her out. Em, she was moved into a side ward and we were told they were doing a favour putting her in a little room. Subsequently, the chaplain came to visit us and they told us - he told us that mum had been put on the LCP. We didn't know what he meant because it hadn't been discussed with my dad, my sister or myself. Em, a nurse came and sat at mum's bed and explained what this regime was and she assured us that mum would be made comfortable and wouldn't be in any pain or distress. Em and mum was given a morphine pump and my sister specifically asked that the staff would make sure that this morphine pump was topped up. Unfortunately, this didn't happen; it ran out in the middle of the night and mum was still fighting to stay alive. Em. To get the pump topped up, you have to get two signatures for it to be administered and by the time that actually happened, they brought the morphine, mum had just died. Unfortunately for her, it wasn't a dignified death and it wasn't without distress. My mum and sister were with her and that will stay with her the rest of their life.
Andrew -
So, in your case, it sounds like you were comfortable enough with the idea of her being on the Pathway, but the nuts and bolts of how that was working weren't handled properly.
Heather -
Absolutely. I mean, I wouldn't say that, you know, the LCP is not the right thing in the appropriate circumstances. You know, mum... mum could not have survived with any quality of life at all after that, but if that's the route we're going to go down, then the staff have got to be well trained, they've got to stick to the procedures for everyone's sake because the experience doesn't leave you, you know, it lives with you for the rest of your life. So, I think we've really got to be so mindful we do all the right things, talk to the right people and make sure everybody knows what's going on
Andrew -
Did you feel that you'd decided, or that if your mum had been able to have a hand in the decision, that this was the right journey for her?Or was it just a decision that was made for her?
Heather -
Em. The decision was made for her by the staff without reference to us. Em, had they talked to us, given what we were shown and how much brain damage she had then had, the kindest thing was to quietly, I think, help her to end her life in a dignified way.
Andrew -
So, you're all on the same page, at least?
Heather -
Yeah.
Andrew -
As to what to what...
Heather -
Yeah, you've got to do it the right way because, you know, when you sit there and you see someone struggling for life, it is terribly distressing and that shouldn't have happened. It really shouldn't have happened.
Andrew -
No, I understand that. See, and I... Just finally, had you talked to her about it because, I've said this on the air before, I can't imagine ever wanting to be in the situation where I would want to die. I think, I would want to, you know, be alive by any means possible for as long as possible because I find the idea of dying so frightening. But that may be because I just haven't come up against the horrors of, you know, of being alive in the sort of situations that people have been talking about this morning.
Heather -
Yeah. Yeah. I think, no, we hadn't talked to mum about it. Em, certainly my dad didn't talk to mum about it. And they were one of the generations who didn't even talk about these things. Em and I suppose, yes, we should all talk about what we want to happen if we get into that situation. Em, because I think that if we could be, you know, stand back from it, we would all say we don't want to stay alive in a state of, you know, a vegetative state. I mean, I do always worry about them saying well, brain dead and that's it and there is no more life, and we do see people who manage to come back from that, but I think, on the whole, if you're going to be a vegetable with no quality of life whatsoever, em, I don't think anybody would really want to be like that. Em, because that isn't a life, is it?
Andrew -
Heather, thankyou very much.
Heather -
Okay, you're welcome.
Andrew -
That's Heather calling the show
......................................................................................
Andrew -
We started the show with Norma, who I met in Newbury yesterday, we've been hearing her story and her take on the Liverpool Care Pathway. You've been listening to the show, Norma, everyone else joining in with their story.
Norma -
Yes.
Andrew -
Which is exactly what you wanted, isn't it, everyone else to share what's happened to them?
Norma -
Yes.
Andrew -
What have you made of what you heard?
Norma -
Well what I've made of what I could hear, a few people who are very, very ill and their family want them on it and they been told about it and they know exactly what it means - that's fine. But my husband, I wasn't told about it, my husband didn't want to die, he wanted to die in his home. He'd been ill for three years and every time the doctor come and the district nurse, he told her he wanted to die in his home. Why wasn't he allowed to. His doctor could have come out and given him the injection then if he had wanted it and I'd known about it. Another thing is, I've been round my doctor's this morning, made an appointment with the manager because I'm going to tell her I don't want to be put on the Pathway.
Andrew -
To make sure everybody knows
Norma -
To make sure, make sure, and also...
Andrew -
Norma. No Pathway for Norma. We want that written everywhere, don't we?
Norma -
Can I just say something else, darling?
Andrew -
Yeah, go on.
Norma -
The leaflets, I told them round the surgery, they didn't know a thing I was talking about the receptionist girls. Why aren't the leaflets put in here so old people know about the Pathway?
Andrew -
So people understand what it is. (Talks over Norma) Well, there is a leaflet, because I've seen it and what we need to do is make sure it's put in places so everyone can have a look at it. Norma.It was really nice to meet you yesterday...
Norma -
Thankyou.
Andrew -
And I'm pleased you were able to air your story. Thankyou ever so much.
Norma -
Oh, lovely, dear, I'm so pleased it's getting publicised. Thankyou. Bye-bye.
Andrew -
That's Norma in Newbury. Thankyou Norma.
......................................................................................
LCP Mark XII
We're now on version twelve. That means it's twelve times they've tried to get this right. What wrongs have they buried?
Dear Secretary of State,
and then the doctors and nurses take over. And they're making all the decisions. and they're saying, oh, this person's near the end of their life."
Misdiagnosis...
"My father was misdiagnosed - he was severely disabled - but he didn't have a terminal condition."
Hospital acquired infections...
"this is a similar sort of thing whereby, you know, someone is not very well but being looked after at home and ends up in hospital for a very small thing."
"My husband went into Frimley Park Hospital for an operation and unfortunately developed peritonitis."
"my sister was 59 years of age. and she had a stroke, so she was sent to a rehabilitation stroke unit. Unfortunately after a week or so there, she got a chest infection."
"To be honest with you, we've been left with a great deal of guilt. We feel that they did it under our very noses and we didn't see it."
A " casual disregard and intolerance of old people, elderly people in NHS hospitals."
"somebody even turned round and said why don't you just let her go because she's 93... and you think, well that's beside the point."
"And he actually told us that, you know,that really and truly my mother would have been nearing the end of her life. And at the age of 91, you know, how much longer can a person go on for?"
Of Gods and Men...
"...do doctors and nurses get their way?"
"Certainly. Dad died."
"doctors have the legal right and the power to make a decision in the best interests of their patient..."
"when I got in, I looked at her chart and she hadn't had - she was a diabetic and she hadn't had her insulin. And I said, why have you not had your insulin? And she said, I don't know. They just haven't given it me."
"Yes, exactly, because unless someone is then fed and given something to drink artificially, they're gonna die."
"Yes. Yes. But it is a dignified death."
"my view of the LCP is that it's nothing more than a legalised version of euthanasia."
"...it's no different to these people who take their family members to Switzerland or wherever it is and, you know, and giving them a lethal injection or allowing them to die in that way."
"I, I think the principle is not much different."
TRANSCRIPTION FOLLOWS -
Andrew -
We're talking about a controversial measure that's used when people are ill in hospital and getting to the end of their life. It's called the Liverpool Care Pathway. I suspect a lot of people listening have never heard this term. I certainly hadn't until a couple of days ago. What it means is that doctors and nurses can make decisions to make a patient more comfortable in the final days of their life by stopping medication as patients become weaker and don't want to eat. It also can mean stopping food and drink.
Let's meet Norma. I went to see Norma at home yesterday in Newbury.Norma's husband Leslie passed away in November. He had been ill and at the end of his life he was in the West Berkshire Community Hospital. Norma is really angry that he was put on the Liverpool Care Pathway without her even knowing about it. She told me more about how sick her husband was in his final months.
Norma -
he did have arthritis quite a lot all over his body and in his feet but he also became very frail. I had to bring his bed down here, his commode beside him, but Leslie was a very independent man. he hated the thought about going into hospital and being put into a cot bed even though they insisted in case he falls but to be put into a cot bed to him was to lose his freedom.
Andrew -
The sense I've got from just, you know, watching you talk about him, Norma, is that, you know, even in the difficult, final few months, I imagine you had quite a good time together, didn't you?
Norma -
We did... We did. There was lots of laughs in here and jokes, especially with his carers. He loved his carers and they loved him.
Andrew -
What's interesting about the story is that you guys were still planning for the future. You were planning Leslie's birthday...
Norma -
Yes.
Andrew -
You were planning for Christmas. So, you were both very positive and focussed on, you know, getting better and, you know, things still to come, weren't you?
Norma -
Well, I wasn't focussed on him getting better because I knew he wouldn't get better but, whether Leslie got better or not, we were always positive. Every day we wake up, we were happy. I used to come down the stairs singing and he'd say, darling, give me a kiss. And that's how my life was, full of happiness.
Andrew -
Did you guys think about, even talk about the fact that you were nearing the end of Leslie's life?
Norma -
Yes. And he told me he wanted to die in his own home. he was looking forward to his birthday and to being with me at Christmas. We were so close, as soul mates, that to part from me would have broke his heart.
Andrew -
Now, after being admitted to hospital, Norma said the the nurses did stop feeding Leslie, stop giving him his medication, and then without her knowing started giving him morphine injections.
Norma -
My legs wouldn't move. I was shocked in horror, because I knew then what had happened. So, if the nurses have the right to start this without the family and the wife knowing, I think it's jolly well disgusting. I don't think it should be allowed. Who are they, the nurses to decide when somebody is going to finish their life? If they're terminally ill, you might know a bit better, but it could be next week, the week after, but nobody knows that and I defy them to tell me they do.
Andrew -
So, when you found out the nurses and the doctor were taking this view of the situation, administering morphine to your husband, what did you do?
Norma -
I shot over there in a taxi and I think they'd given him another dose because he'd laid in the bed... stoned. He couldn't talk, his eyes were rolling, he looked absolutely awful.
Andrew -
And, and what conversation did you have with the staff there about the situation, Norma?
Norma -
I was so depressed because I knew I couldn't do anything. I knew... What could I do?
Andrew -
Were they interested in your view of the situation? Did they want to talk to you?
Norma -
No, they didn't talk to me, they didn't come and say, you know, how do you feel about this, or do you know what's happened. Nobody spoke to me or gave me a leaflet about this; there are leaflets, I'm told, but I've never seen one. When I came in that ward, right from the beginning, I wasn't given a leaflet, I wasn't told my husband was going to be on the Pathway, until they gave him the injection. And they told me over the phone, which I think is all wrong, by a strange doctor that I didn't even know. The sad thing for me was that, even on his birthday, we had to sit him, lay him in bed and he couldn't talk to us. I tried to lift his head to get a drink in him and he couldn't swallow it because they'd give him so much morphine his mouth wouldn't hardly open to get a drink down. The sad thing was he died Friday morning and they gave him... somebody got there before me, a man from the Legion who was a friend of his, and he saw two more injections going in him. And Leslie just gave him a smile. And that was the end of his life. I wasn't told early enough to get there so I could've talked to my husband before his death, if he had of been talking. It was like, to me, they put them... they're too needle-happy. They put them on a conveyor belt. Their feelings are not considered, neither is the wife's feelings considered, or the family's. I had no chance to get his children from Canada over here, and they did it all the week without any consideration whatsoever.
Andrew -
Norma Weaver speaking to me at her home in Newbury yesterday. We were both in tears by the end of that it was time to go. She's a really lovely woman. I'm going to talk a bit more about Norma's story on the show this morning. What do you make of it? I wonder who you think should be in charge of the decisions about someone's medical treatment, healthcare at the end of their life? I wonder if you have been in a similar situation as Norma? My number's 0845 900 1041. The Berkshire NHS Healthcare Foundation Trust say they want to offer their deepest sympathy to Norma Weaver for her loss. They're aware of her concerns which they're looking into. But patient confidentiality means they can't comment on the radio about cases like this.
They say when a patient is close to the end of their life, they follow rigorous standards on how they care for the patient and how they communicate with them and their families. Their priority is to provide the best quality of care at the end of a patient's life, and to ensure the patient is as comfortable as possible at that stage. Measures may include discontinuing unnecessary medication and providing pain relief if that is in the patient's best interests.
Your view welcome. My number 0845 900 1041. Dr. Tim Harlow, consultant in palliative care, and chairman of the ethics committee at the Association of Palliative Medicine is on the line. Hello Tim.
Dr. Tim Harlow -
Good morning, Andrew.
Andrew -
What is the Pathway? Because Norma didn't know about it. I didn't know about it. It seems like quite a big deal if it could mean a change in when someone dies. So what do you care of that?
Dr. Tim Harlow -
The Liverpool Care Pathway was first developed in the 1990s and has been in widespread use since about 2001. It's a clinical guideline to help doctors, nurses, to give the best care to patients near the end of their lives who have been diagnosed as dying. One of the key points I think is that communication is embedded in it. Its now in its twelfth version. Each time the people who invented this keep looking at it, keep checking to make sure if there's anything from the feedback to make it better and one of the things that is really emphasised is about communication, making sure that the patient is feeling well enough but certainly the relatives are communicated with and do know what's happening and...
Andrew -
So the principle - sorry to interrupt you - but the principle is about not keeping someone... medically alive, you know... beyond the point at which that's a pleasant and comfortable experience for them. I don't know how to best express it, but that's what this is about, isn't it?
Dr. Tim Harlow -
It's not about either shortening people's lives artificially, or artificially prolonging them. It's only used, should only be used, when the whole multidisciplinary team looking after the patient are as sure, as sure as they can be - no-one can be 100% sure - that that person is now dying and there are no reversible causes for that persons decline.
Andrew -
Now if the doctors and nurses have taken that view, do they take account of what the patient themselves says or would have wanted? Do they take account of what the patient's partner and family believe about the situation? Because that appears to be what's not happened here.
Dr. Tim Harlow -
Yeah, I was really sad to hear Norma's case because there were clearly... they knew he was really frail, they both knew that he was very poorly, but they were still planning for the future, so it was all positive... and to have what's always going to be a horrible and difficult time for someone dying, to have that... with all this, this anger and fear and worry that she feels now, it's ... I was very sad to hear that.
Andrew -
Right, I mean... What we've heard, and we've only heard Norma's side of the story along with the statement from the relevant bit of the NHS is not the Pathway being implemented as it should be from the way you've described it
Dr. Tim Harlow -
Well, I'm not going to comment on an individual case for just the reasons you've talked about. But I think it is clear that important always for the LCP, the Liverpool Care Pathway, is good communication..
Andrew -
Who has the last say?
Dr. Tim Harlow -
Well, with any treatment, it is always good practice - the General Medical Council - the ethics advice is that relatives, next of kin, friends, must be consulted if that is possible.
Andrew -
But... I mean in this case it was possible - it may not often be possible - but it may be that the family and the doctors can't reach agreement about the best way forward. If that's the case, who decides, Tim?
Dr. Tim Harlow -
If things get to the stage where, I mean, let's say the relatives are... sometimes we have relatives who are disagreeing - there are family feuds, for instance... these are rare occasions, but they do happen - or people are just not available... in which case, we... it is up to the clinicians responsible to do what they feel is the best thing for that patient. Now, the Liverpool Care Pathway is not prescripted, it's not saying you must stop things, you must stop food and drink. if the patient is able to take that, that's fine. Very often, as people are getting near the end of their lives, their body chemistry is winding down anyway and, actually, their desire for food and drink is greatly reduced...
Andrew -
Sure
Dr. Tim Harlow -
and sometimes it can be quite hard to have that forced on them when they don't want that any longer.
Andrew -
Right, Tim, thanks very much indeed for explaining it on the show.
What do you make of this? I wonder if you've been in a similar situation and you may feel that you lost a relative and the Pathway was just the best thing the best way for managing the end of their life? You might be cross like Norma. You might have a view about who should decide what happens in this sort of situation - the family or the doctors? My number is 0845 900 1041.
......................................................................................
Andrew -
Here's Jackie, good morning Jackie.
Jackie -
Oh, good morning.
Andrew -
So, today we're talking about the Liverpool Pathway. We're telling Norma's story, Norma really cross that her late husband was put on this pathway and that food and drink were withheld, medication was stopped without anyone consulting her. What happened in your family, Jackie?
Jackie -
Well, I wanted to ring to say Norma's case isn't an isolated incident. My father was misdiagnosed - he was severely disabled - but he didn't have a terminal condition. He lived with us at home. He got a bladder infection, went into hospital, but no urgency was put behind diagnosing his bad chest.
Andrew -
Right. I feel this is a similar sort of thing whereby, you know, someone is not very well but being looked after at home and ends up in hospital for a very small thing.
Jackie -
That's right. And in his case they wouldn't feed him because they said they wanted to... First of all, they had to be sure what was wrong with him. They refused to do a CT scan. We pleaded with the doctors to do one. We had the consultant brought down to his bedside and the surgical registrar. They said, oh we haven't spoke to the radiologist yet but, in the meantime, dad was getting worse. They wouldn't feed him. Eventually, we were called in. They said, we're not going to do a CT scan because he's got a perforation. We said, well er - a bowel perforation - We pointed out that that was highly unlikely because he didn't have the symptoms of a bowel perforation.
Andrew -
Well... Were they listening to you? Did you feel that you were part of making decisions about dad with the doctors and nurses?
Jackie -
The point I'm making is that what happened to Norma, what happened to us, is symptomatic of what I'd call casual disregard and intolerance of old people, elderly people in NHS hospitals.
Andrew -
Do you think then the doctors and nurses were listening to what you wanted to happen?
Jackie -
Oh no, not at all, they totally disagreed and then three hours later...
Andrew -
They're allowed to disagree, but I'm just interested to know when the family and doctors and nurses don't agree about what needs to happen, you know, do doctors and nurses get their way?
Jackie -
Certainly. Dad died. Three hours after he died, I had a phone call from the consultant who said there would have to be post mortem because em she hadn't got enough details of his condition to go on the death certificate. And at the post mortem, it was found that he didn't have a perforation at all. he actually had a pulmonary embolism, which is a blood clot, which is a treatable condition.
Andrew -
Mmm... And how, I mean, how do you feel about what's happened? You know, clearly, like Norma, you're grieving, you've lost someone very, very important to you. How do you feel about the end of your dad's life, Jackie?
Jackie -
Well... very angry, very bitter and we have no closure. The important thing and the reason I'm ringing you now is to try and make sure that this sort of thing doesn't happen to anyone else.
Andrew -
Okay, Jackie, thankyou very much indeed. I'd like to hear from you if you had the same sort of experience as Norma and Jackie. I'd like to know if you've had a loved one on the Liverpool Pathway and you've been really happy with it. Who should make the decisions about the end of someone's life - the medics, or the family?
Shaun Lintern is from the Nursing Times. Hi Shaun.
Shaun Lintern -
Hello Andrew.
Andrew -
Heartbreaking stuff this. I mean, How common do you think it is that people are put on the Liverpool Pathway without their family even knowing, certainly without the family even agreeing with it?
Shaun Lintern -
Well, er, I think it's fair to say that when you look at the figures for people who die in hospital, I think it's well over 55% of the deaths that occur in hospital, but the numbers that are put on the LCP are probably quite small. The National Care of the Dying Audit which looks at over 150 hospitals and looks at the way patients die and how they were cared for, that audit showed that, in most cases, 97% of families were aware that the patients were dying and that the LCP was being used. and I think, if I could, I'd like to give you...
Andrew -
Does that mean agreeing with it, though? Because Jackie who we just heard from, she knew that the Pathway was being used, but she didn't endorse that decision, she didn't want it to be the case, she just couldn't do anything about it.
Shaun Lintern -
Well, er, I think it's fair to say that the LCP does make it clear that doctors should consult with families... it involves...
Andrew -
What... what does that mean Shaun - well, I'm sorry to interrupt - what does that mean? Because we've heard that phrase a few times this morning - Doctors should consult with families... what... and then, and then what, if people can't agree about what the right way forward is?
Shaun Lintern -
Well, it is a very difficult situation. None of us are in the position of a doctor who has the knowledge and the training, of course. I'm no defender of doctors and the Health Service. It's... there are problems and there are cases, unacceptable cases, where families have not been informed or told about the LCP, but I think it's fair to say that unless you have a power of attorney, I believe doctors have the legal right and the power to make a decision in the best interests of their patient...
Andrew -
Gotcha...
Shaun Lintern -
...and it may be that, for some patients who are dying, and it may be very difficult for families to accept that.
Andrew -
It might be the right thing. That's... if we should put that out there right now. It might be that the doctors can take a much more objective view and make the right decision for the patient where the family, with their emotional involvement, cannot do that.
Shaun Lintern -
Yes. Absolutely, and I think that one of the problems with the debate about that's been had about the Liverpool Care Pathway, it's been unfortunately skewed I think by some national newspapers, the daily mail in particular reported this quite badly, because it's not the LCP that is actually at fault. The LCP allows for people to have - if there is such a thing - a good and peaceful death. The problem is that in some isolated cases, staff at hospitals, doctors and nurses, have not implemented it properly.
Andrew -
Gotcha... Shaun, thankyou so much. Shaun Lintern from the Nursing Times.
......................................................................................
Andrew -
So, yesterday, I spent the day at Newbury with Norma. Norma is now a widow, and she says she didn't have time to say goodbye to her husband, to her Leslie, because of a controversial end of life treatment called the Liverpool Care Pathway that her husband was put on at the community hospital in Newbury. This is when medication and food, even water is withdrawn from someone who is dying. Norma told me that, at no point was she told this was the plan, at no point was she asked for her consent, at no point was she consulted about whether this was what Leslie would have wanted. She told me more about how she felt when she realised that her husband had been taken off his pills and was being given morphine.
Norma -
My legs wouldn't move. I was shocked in horror, because I knew then what had happened. So, if the nurses have the right to start this without the family and the wife knowing, I think it's jolly well disgusting. I don't think it should be allowed. Who are they, the nurses to decide when somebody is going to finish their life? If they're terminally ill, you might know a bit better, but it could be next week, the week after, but nobody knows that and I defy them to tell me they do.
Andrew -
So, when you found out the nurses and the doctor were taking this view of the situation, administering morphine to your husband, what did you do?
Norma -
I shot over there in a taxi and I think they'd given him another dose because he'd laid in the bed... stoned. He couldn't talk, his eyes were rolling, he looked absolutely awful.
Andrew -
And, and what conversation did you have with the staff there about the situation, Norma?
Norma -
I was so depressed because I knew I couldn't do anything. I knew... What could I do?
Andrew -
Were they interested in your view of the situation? Did they want to talk to you?
Norma -
No, they didn't talk to me, they didn't come and say, you know, how do you feel about this, or do you know what's happened. Nobody spoke to me or gave me a leaflet about this; there are leaflets, I'm told, but I've never seen one. When I came in that ward, right from the beginning, I wasn't given a leaflet, I wasn't told my husband was going to be on the Pathway, until they gave him the injection. And they told me over the phone, which I think is all wrong, by a strange doctor that I didn't even know. The sad thing for me was that, even on his birthday, we had to sit him, lay him in bed and he couldn't talk to us. I tried to lift his head to get a drink in him and he couldn't swallow it because they'd give him so much morphine his mouth wouldn't hardly open to get a drink down. The sad thing was he died Friday morning and they gave him... somebody got there before me, a man from the Legion who was a friend of his, and he saw two more injections going in him. And Leslie just gave him a smile. And that was the end of his life. I wasn't told early enough to get there so I could've talked to my husband before his death, if he had of been talking. It was like, to me, they put them... they're too needle-happy. They put them on a conveyor belt. Their feelings are not considered, neither is the wife's feelings considered, or the family's. I had no chance to get his children from Canada over here, and they did it all the week without any consideration whatsoever.
Andrew -
People will be able to hear how angry you are...
Norma -
Yes.
Andrew -
You're obviously grieving for the loss of your partner (talks over Norma...)
Norma -
Well, I'm angry because they got so much power... And for somebody to have that power over life and death, to me, is the most terrible thing and it reminds me of the war days. It's against Christianity, it's against any civilised thing that I've ever known in this country, civilisation.
Andrew -
So, you want the rules changed so that the nurses and doctors (talks over Norma...) and nurses in this situation have to do what?
Norma -
Not... Well not be able to have so much power that they don't include the wife and the family. You see, there should be somebody - if an old person hasn't got any family, then they should have their social worker or somebody there on their side to understand what they're signing for - because my husband wouldn't have understood what the Pathway was and nobody has had to account for it. None of the staff have had to account for it. And now we have it in Berkshire and I want it looked into.
Andrew -
What do you think about your husband. Tell me about the things that are in your mind. Moving away from the end of his life, let's talk about some of the time that you shared here.
Norma -
Leslie was a great person. He loved life. I know he would never wanted to die because he loved life, he would have fought it to the end.
Andrew -
What do you think he's saying to you now? Because he's (talks over Norma...) watching over us as we're having this conversation.
Norma -
I say, Leslie, I'm fighting for you, darling. Right. And I shall have this put right whatever if it takes me all my life, I will have this put right for Leslie.
Andrew -
Norma, who I met at home in Newbury yesterday.
Talk to Helen McKenzie Director of Nursing for Berkshire's healthcare NHS Foundation Trust which runs the community hospital in Newbury where Leslie was treated.
Morning Helen.
Helen McKenzie -
Morning Andrew.
Andrew -
What do you make of what you've just heard?
Helen McKenzie -
Er... Well, of course, when... when one of your loved ones is dying, of course its, its really hard, isn't it? And I absolutely can understand from Mrs Wheeler's point of view that, you know, it's really important that the doctors and nurses have conversations with their relatives. Em... You know, I'm absolutely here, and our heart goes out to her, doesn't it, when you hear her on the radio, absolutely how hard it is when you lose a very important person in your life?
Andrew -
Well... That's true. Em, but that's not how Norma sees it.
Helen McKenzie -
No, I...
Andrew -
Em... I put that to her repeatedly, I don't know if you heard it in the bit of the interview with Norma that we've been able to broadcast so far... but I did press her a little bit on whether, really, she's just angry because she's been bewreathed, because she's lost the love of her life and she's very determined to say it's not that. I fully accept that my husband was dying; I don't accept how the end of his life was managed by the folk at the hospital that you run, Helen.
Helen McKenzie -
Yeah, it's really hard for me to talk about a specific case, but if I talk about the Liverpool Care Pathway, and it's... it's an assessment tool that doctors and nurses use to understand when someone is near the end of their life. It's when they're in their last few days and hours... And it's really, really important that, as part of this assessment, they have a conversation with families and carers. But it's a really difficult conversation to have, isn't it Andrew?
Andrew -
Well, of course, yeah. I.. but from what we can tell, in this case, it didn't happen.
Helen McKenzie -
Well, I... I... It's really difficult for people when they're having a difficult conversation with doctors and nurses to hear what's being said. I think the point that Mrs Wheeler made at the end around perhaps having somebody else there to listen at the same time is, is, you know, a really valid point.
Andrew -
well, I... I mean, are you saying it did happen?
Helen McKenzie -
I... can't talk about...
Andrew -
Norma's forgotten it or...
Helen McKenzie -
I... I really can't talk about a specific case, but what I can say is when a patient is considered to, to be near the end of their life, a conversation should happen between doctors and nurses. I... I don't know the details in Mrs Wheeler's case and I obviously can't talk about those on the radio. Em., but, you know, the assessment tool enables a very comfortable, pain-free death with dignity. And actually I think that's what people want. Death is a part of life. It's inevitable for us all. And actually the Pathway... er came out of a hospice in Liverpool in 2001 and it became er, it was launched in the NHS as part of the end of life strategy in 2008. And it is about, you know, really making sure that the best possible care is given
Andrew -
I mean, of course, it has the best possible aims. No-one's going to doubt that and no-one's going to doubt that everyone involved in this and every case is doing their best to do the right thing' Of course, they are. but, if it's the last thing someone wants; if the person, the patient themselves made it really clear when they were able to communicate this was not something they would have wanted; when their families say this is absolutely not what we want, surely doctors and nurses don't just press ahead.
Helen McKenzie -
No...
Andrew -
And end someone's life?
Helen McKenzie -
A-a-absolutely not and, of course, the tool is about... it's not about ending someone's life; it's about enabling them to die with dignity. It's recognising that a person has entered the last few hours or days of their life.
Andrew -
Right. I mean in a couple... In this case we're talking about here and other stories we've heard on the show this morning,
Helen McKenzie -
Yeah...
Andrew -
what sometimes seems to happen is that people go into hospital, who are unwell, you know, not got years left, but are living perfectly happily at home; they get what seems like a minor complaint, you know, a rash or something like that, they go into hospital and then the doctors and nurses take over. And they're making all the decisions. and they're saying, oh, this person's near the end of their life.
Helen McKenzie -
I really, really don't think that's the case, Andrew. I really don't think that's the case.
Andrew -
I can't say it is or it isn't but it is the experience of listeners who have spoken on the show this morning.
Helen McKenzie -
Er is that... When you come into hospital, you - you know - unless you're coming in for planned surgery as such, you know, you're, you're admitted to hospital at a point where you must be quite poorly. You don't go into hospital for something really minor. You're going in for a particular reason. And in some cases, you know, the majority of people who come into hospital actually do go home. You know? So that we're thinking about those people that come into hospital and actually, they're, they're... for whatever reason they've come, and they start to get very poorly and actually their body, it... it starts to fail them... It's at that point that we may start to have conversations with families. It's about absolutely everybody is an individual. It's about assessing individuals for what they require. But, you know, we now have people coming into hospital, you know, saying who are well saying, I don't want to go on that Liverpool Care Pathway. And actually what we've got now is a public who are very scared and actually it's been much harder to ensure that we are able to give high quality care at the end of life.
Andrew -
Helen. I'm going to stop you. Thankyou so much for talking so honestly about where you're coming from because what I want to happen as a result of this morning's programme is that people will know about it, people get the term, people will have heard this term Liverpool Pathway so that if it's ever used people will know what it means and can think about it and explore it and find out more about it and all those kind of things so that we just know that it's something that's being used in the NHS.
Helen McKenzie -
Yes
Andrew -
Because I think a lot of people don't know. Within the NHS it's probably old news, but I think for a lot of people listening it isn't
Helen McKenzie -
No
Andrew -
Em, really, really useful, Helen, thanks ever so much.
Helen McKenzie -
Okay, thankyou.
Andrew -
Helen McKenzie who is actually Director of Nursing for Berkshire's healthcare NHS Foundation Trust.
I'd love to hear from you if you've had a relative on the Liverpool Care Pathway. I'd love to know if it was a fitting and dignified end to their life which is what it's supposed to be. I'd love to know if it didn't go so well. I'd like to know who you think should make the decisions about the end of someone's life. The doctors, or the family. My number's 0845 900 1041
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Andrew -
Good morning, Caroline.
Caroline -
Good morning.
Andrew -
Good morning, Gabriel.
Gabriel -
Good morning, Andrew
Andrew -
So, tell me about your experience of, em... how the death of a loved one, the end of a loved one's life was managed, especially if it involved this Liverpool Care Pathway. Caroline, you first, go on.
Caroline -
Em, mum was taken into hospital at the end of last year and my sister wanted to stay and she was told originally she couldn't because mum was on the ward. Then, miraculously they found a side ward and they said the only way that my sister could stay was if she agreed to the LCP. Well, reluctantly, we said okay, because, you know, my sister wanted to stay with her. Em, then we were told, because she was taken into a side ward, we shouldn't have had to agreed to it because she was a very ill lady. When we sort of carried on with it and everything else, em... and they said your mother will be taken care of and everything will be fine and you know everything else and nothing will change. Well it did, because, once you agree to the LCP Pathway you... take all rights away. Or they take all rights away. They don't do anything for the patient. They make sure she's comfortable or... and all that sort of thing, but they stop all ops, they stop all drips, they stop absolutely everything and they just keep the patient comfortable. And that's all literally that they do. If they've got a drip up, they wait till the drip's finished and they stop the drip. My mother was on oxygen which they carried on giving her, but everything else stopped. And my sister didn't see a member of staff for three hours, four hours a day. It wasn't until they came in and said oh we're going to turn your mum.
Andrew -
Now, did... You're explaining very articulately how it works. Did it.. Were you happy with it? As happy as you could be in the situation? Did you think it was a sensible way of managing the end of her life?
Caroline -
Em. At the time, we did, yeah. But when we found out that we didn't have to agree to this - the Pathway - we were really cross and angry because literally everything was taken away from her. Em, and we didn't need them to keep saying it's the best thing for your mum because she's an elderly lady. you know, somebody even turned round and said why don't you just let her go because she's 93... and you think, well that's beside the point. We know she's an elderly lady but you don't have to keep telling us. And she couldn't eat, she couldn't drink, and this was why the drip was up. And the nurses would keep going out and saying, oh she's in distress. Well, mum wasn't in distress. And that's the only time they would give other medication, if they thought that the patient was in distress.
Andrew -
Okay. Caroline, thankyou. Gabriel...
Gabriel -
Good morning, Andrew
Andrew -
You had your mum on the Liverpool Care Pathway as well, tell me about it.
Gabriel -
I did. She passed away on February 14th 2012. And I must say that the acute stroke unit at the Royal Berkshire Hospital are to be commended. The consultant there - the urology consultant - took myself and two brothers into a room to explain what was happening to my mother. She was suffering from a series of mini strokes. And he actually told us that, you know,that really and truly my mother would have been nearing the end of her life. And at the age of 91, you know, how much longer can a person go on for? But I must say although it works for us and we accepted it as a family there are bound to be cases where the LCP will fail miserably as I've heard this morning.
Andrew -
Mmm, mmm
Gabriel -
I must pass my condolences to Norma and Jackie...
Andrew -
Well... what do you sort of want, though, if the Pathway isn't what the person would have wanted themselves or not what the family want... Therefore is it necessary in every case, I don't know.
Gabriel -
Well, I take the view, em, Andrew that my mother was 91, we sort of like her with us today, but the fact is she was 91, how much longer must a person... can a person go on for? She was... She passed away peacefully... I can only say, you know, what happened to our family. Em... my mother passed away peacefully and with dignity in the stroke unit and we... we as a family accepted it because my mother had a series of mini-strokes... She wasn't going to get over it. They removed hydration from her, although my sister, Lucien in Newbury and Rosie from Solihull came down and stayed throughout 24 hours with her; we were allowed to stay with my mother. They moisted my mother's lips and, er, hydration was taken away from her... But, you know, it worked for us. And I can't say it would work for everybody, but this is my experience as a family.
Andrew -
Sure, Gabriel... Linda.
Linda -
Ah, hello, good morning.
Andrew -
What happened with your husband?
Linda -
My husband went into Frimley Park Hospital for an operation and unfortunately developed peritonitis. I was called into the hospital and spoke to the doctors. I was told that they had decided that it was in my husband's best interests to withdraw treatment and just to keep him comfortable and pain free. Then I was given the choice - he could either go to a hospice, they could nurse him in the hospital, I could have him home. I chose to have him home. When I went to see my husband, he wasn't able to speak at that time and I said would you like to come home, and I had just a little nod from him. And I must say I cannot fault the care. They phoned the people who look after the equipment to get a special bed to come in for my husband and we have an L-shaped dining room come lounge and the dining area was converted into a bedroom. While I was waiting in the hospital, I had a phone call to say oh we're outside your house waiting to deliver your bed, where are you?
Andrew -
Right...
Linda -
I said, for goodness sake, please stay there...got home quickly. Em, my husband was... came home later that day. Unfortunately, he only lived another three days, but we had the district nurses, the Marie Curie who are end of life nurses, not just cancer. I had somebody come at night to sit with him, just for the three nights that he lived, and I just cannot fault the care.
Andrew -
I mean again, a lot of people have a thing, understandably about wanting to die at home
Linda -
Yes
Andrew -
And if the end of someone's life is being managed in such a way that makes that possible, that means you can see people, people can see you, you've got your Perry Como records playing or whatever it is, then that's perfect, isn't it? Everything about Norma's story is exactly the opposite. here's a man who desperately wanted to die at home and then couldn't.
Linda -
Yes, very..for her... but em I mean the family came round, we didn't keep quiet because obviously we were in the other part of the room. And we chatted and the television was on. And I went up to him, although he couldn't answer me back. I did say to him, "You're home now, you're with me, you wanted that didn't you?" And I had another little nod from him and that was his last communication with me. But I did say to him, because I knew he could hear me, I said, "Oh, I'd read the paper to you if it wasn't such a load of old rubbish."
Andrew -
Laughs
Linda -
...like that, you know, we just carried on and, unfortunately, he just passed away in the night, I'd just gone to bed, I was so sad about that. He had this young lady there and she just came and got me. I cannot fault the care we had... It was just so wonderful. Every time the district nurse or the Marie Curie nurse we saw their car coming... And the care, it wasn't just for my husband, it was for us as well. It was absolutely wonderful, if a time like that can be wonderful.
Andrew -
Linda, it was good of you to talk on the show about it. I'd love to hear from you about the end of someone's life, that's what we're talking about, the end of a loved one's life, and whether it involved the pathway, whether that worked well. Who should make the decisions about someone, because it's fair enough to say doctors and nurses can make far more objective an assessment of whether - I don't know how to put it in a nicer way - if there's any point in someone staying alive any longer.Who should be in charge of deciding how someone's life comes to an end? What's your experience of all this. My number is 0845 900 1041. So grateful for your calls this morning. Please keep them coming.
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Andrew -
Here's Ruth. Hi, Ruth.
Ruth -
Hi, Peachy.
Andrew -
Good morning to you, so we're talking about the Care Pathway, the Liverpool Care Pathway this morning which is used to manage the end of people's lives asking for you experience, asking who should make the decisions. Tell me
Ruth -
Mum went on it two years ago and to be quite... it was pretty quick with mum. She went into hospital and we got told that she was due on the Liverpool Care Pathway. They explained it all to us, but what I found useful they gave us some leaflets so that we could actually read it and digest it. And they withdraw everything. They came every so often to wet mum's lips and they gave us a sponge to do that as well.
Andrew -
So they, so they, gave you a sponge to, so she could have a little drink.
Ruth -
Yeah I know... because she couldn't swallow
Andrew -
Yeah
Ruth -
it was a sponge and you just wetted her lips.
Andrew -
And... I mean, did you feel that it was the right thing when they explained it to you, they told you all about it, did you think, you know what, the last thing I want to do is lose my mum but actually it's time.
Ruth -
Yes. My mum had, she's had cancer, she had stroke, and she, I think she had been started the Liverpool Care Pathway before she went into hospital without us knowing... because...
Andrew -
She kind of signed up to it herself/
Ruth -
Yes. She started giving away her jewellery
Andrew -
Right.
Ruth -
And things like that. And it was only after she died that I realised that... that was what was happening. But the only upsetting thing we found was that after mum had died we got told to take her rings off her fingers because they can't guarantee their safety
Andrew -
Yeah.
Ruth -
And that was awful. But the Pathway was fantastic. And they left mum on the ward with us. And they just put the curtains round her. and I found that better than being in the room with her on our own.
Andrew -
Yeah. where you felt most comfortable...
Ruth-
Yeah.
Andrew -
So in your case and in your mum's case, we know what she wanted because she sort of volunteered and gone down that road herself and that I guess makes it a lot easier to compute for Norma who's absolutely certain it's not what her husband would have wanted. he'd have wanted to be at home; he'd have wanted to see his family; er, you know, he had religious beliefs he didn't want any sense of his life being ended, all these things meant that in their case it was a much less - happy is the wrong word - tranquil... experience? I don't know.
Ruth -
It's something that you can't change, either, because you basically the moments you got.
Andrew -
Ruth, thankyou very much indeed for contacting us this morning
Ruth -
Right, you're welcome.
Andrew -
Who should make the decisions about the end of someone's life - doctors or their family? 0845 900 1041.
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Andrew -
We've got Maureen. Hi, Maureen.
Maureen -
Hello. Good morning Andrew.
Andrew -
And we've got Abbie. Good morning, Abbie.
Abbie -
Good morning.
Andrew -
So, Maureen first. Tell me about your sister.
Maureen -
Well, my sister was 59 years of age. and she had a stroke, so she was sent to a rehabilitation stroke unit. Unfortunately after a week or so there, she got a chest infection. And so she was transferred to another hospital within the Trust. After being put on the acute medical, she made a really good recovery so we assumed that she would be sent back to the stroke unit. But they didn't; they transferred her onto another ward.
Andrew -
Right...
Maureen -
in that hospital
Andrew -
And I mean, at that point, you and the family must have had... your alarm bells ringing, to some extent, I mean you, you trust the medical staff to know what they're doing but
Maureen -
Absolutely.
Andrew -
But you're thinking, hang on a minute, why is she not going back to the stroke unit? What did they say?
Maureen -
Well we did actually ask for a meeting with several members of staff with a view to her going back to the stroke unit to continue her rehabilitation. We met with about six people around the bed. Em, they didn't want to hold the meeting in front of her but we insisted because my sister was compos mentis, she knew everything that was going on. So we had the meeting in the room and after a long discussion, they thought, yes, she would benefit greatly from going back and finishing her stint at the rehabilitation unit. That was on the Tuesday...
Andrew-
Yeah.
Maureen -
On the Wednesday, I called and said, you know, was the move imminent? It's nothing to do with us, call another department So I called the cab department and they said it's nothing to do with us, it's to do with the ward.
Andrew -
Right. And so it goes on... Let, let me move on to the point at which you found out that your sister had been put on the pathway in fact.
Maureen -
Well, we had gone into the... the nurses actually started... they obviously listened to us talking and they... my sister's grandson had a birthday on the 8th of June 2012, and so they were saying, oh you have a celebration coming next... Yes, yes. So, on the Friday, it was the only night because my niece had been staying with her. On the Friday, it was the only night she was left alone. And when I called, they said my sister had taken a turn. So we got up to the hospital on the Saturday morning and they said she wouldn't now be moved to the stroke rehabilitation, she had to stay there...
Andrew-
Right.
Maureen -
...until she made progress again. We had a meeting with them on the Tuesday and they said... We actually said we don't want her medication changing, we don't want anything changing.
Andrew-
And how did you find out that that indeed was happening?
Maureen -
Well, I went in and they had taken down her drip was the first thing. And I asked why have you taken down my sister's drip? And they said, well, she can drink a thousand mLs of liquid, so there's no need to have this. So I said, well I don't think she can. I mean, I'm a really fit person and even I struggle to drink a thousand mLs, because I'm not a great one for drink during the day. And then they started to remove other things.
Andrew -
Did they ever ask you about it?
Maureen -
No, no, they never discussed it. On the Wednesday, I'd gone in to see her and I'd been in to Marks and I'd bought some little for her, some little... and things. And when I got in, I looked at her chart and she hadn't had - she was a diabetic and she hadn't had her insulin. And I said, why have you not had your insulin? And she said, I don't know. They just haven't given it me.
Andrew -
Right. So, clearly by this point, she's being denied food and medicine. And how do you feel about it now, looking back on the end of your sister's life, Maureen? You sound pretty cross.
Maureen -
To be honest with you, we've been left with a great deal of guilt. We feel that they did it under our very noses and we didn't see it.
Andrew-
Right, okay Maureen... (speaks over Maureen)
Maureen -
.... nine years of age...
Andrew-
Let me stop you. I've got a lot of people waiting to talk...
Maureen -
Yes, of course.
Andrew -
I'm really, really grateful that you were willing to talk about your experiences this morning. thank you ever so much.
Maureen -
Okay. Thankyou.
Andrew -
Thankyou, Maureen.
Abbie?
Abbie -
Yes.
Andrew -
Em. Tell me your view as to who should make the decision. Em, you know, if someone is coming to the end of their life, who decides what happens in terms of their care?
Abbie - My view is probably going to put the cat amongst the pigeons somewhat.
Andrew -
No, go for it.
Abbie -
You spoke to my mother earlier, Caroline. Em, my grandmother was put on the LCP against the wishes of my aunt and my mother as you heard. And my view of the LCP is that it's nothing more than a legalised version of euthanasia. Because the way I see it is the doctors and nurses are there to help protect life. They're there to protect the sanctity of life by giving medication, by giving care in order to keep someone alive. By putting someone on the LCP and taking away any form of treatment, they are therefore basically turning round and saying well that person's okay to die. So it's no different to these people who take their family members to Switzerland or wherever it is and, you know, and giving them a lethal injection or allowing them to die in that way.
Andrew -
I, I think the principle is not much different.
Abbie -
No. In my view, the hospital that my nan was in made the decision to allow my grandmother to die.
Andrew -
Or, at least, not to do everything it could to keep her alive.
Abbie -
Yeah. And that makes me angry. The decision was taken away. yes, my nan was very ill. And yes my mum, my aunt, my dad, all of us, we didn't want to see my grandmother suffering any further, but we didn't want to see nurses and doctors making the decision to allow her to die for us.
Andrew - Do you think you ever would have made that decision as a family; can you ever as a family, say, we love this person, we want them to be with us but the last thing we want them to do is to die, but it's the best thing?
Abbie -
I think had it been done in a different way then we probably would have come to a similar, but there was no way that we would have done it in the way it was done by withdrawing all means of any, you know, all means of, not so much prolonging her life, but keeping her alive.
Andrew -
okay. Abbie, thankyou. Betty.
Betty -
Hi, Andrew.
Andrew -
Good morning to you. Good morning Jackie.
Jackie -
Morning
Andrew -
Morning to you. Betty first, then. Your husband died on the Liverpool Care Pathway.
Betty -
He... He did. But not necessarily so, because he was very ill and he had lost the ability to drink and to swallow which a lot of people don't understand happens when somebody is near the end of life and that's why the Liverpool Care Pathway comes into play.
Andrew -
Yes, exactly, because unless someone is then fed and given something to drink artificially, they're gonna die.
Betty -
Yes. Yes. But it is a dignified death. And a lot of people don't realise that when you are near the end of life, your organs are all failing and you're quite likely to suffer from a heart attack and then you have to make an alternative decision - Would you like your loved one to be resuscitated? And that to me is the most unpleasant, painful way to die, to actually be, em, have your chest pounded and maybe not survive anyhow.
Andrew -
This is a way of avoiding that.
Betty -
It is a way of avoiding it and I do believe that's why the LCP was introduced.
Andrew -
To what extent were you asked about it and asked about, you know, asked about what you thought was best?
Betty -
My husband's stay was in two different places. He was in a hospital before a hospice and the prognosis was not good and I asked what the alternative treatments were and there were none. I was told that, at that stage, the LCP would be introduced if I was willing to go along with that and I'd never even heard of it until My husband was ill. And then when he became desperately ill, I was asked if I would like him resuscitated and I said no after I had the explanation made as to what would happen and how undignified and unpleasant it is and not a very nice way to end your life.
Andrew -
What's good to hear is you're just clearly at peace with this whole thing. We've all got to feel for the people who have spoken this morning who are not at peace.
Betty -
What is the alternative? Have they considered that their loved one may suffer total organ failure, heart attack, have to be resuscitated, which is a very unpleasant way to end their life and the relatives may not be with the loved one at that stage anyhow.
Andrew -
Betty, thankyou. Jackie?
Jackie -
Em, yes.
Andrew -
Tell me about your husband.
Jackie -
He died in May 2008, so I don't know if the LCP was actually in place then, anyway.
Andrew -
Well, it's been around since the 90s, but it's being used in more and more places as I understand it.
Jackie -
Oh,right, yes. Well, when he went in he had Alzheimer's anyway. He had that for nine years. It was in the very late stages. he went in with yet another urinary infection. And when he went in that time, I said could they just not treat it because I felt he was in so much distress and anxious and, you know, every time and everything like that at home.
And I talked to the consultant and he said no they couldn't do that because it was tantamount to euthanasia and he was too young. Well I think, well I mean he was 72 and that is quite young these days, but, to me, age isn't the important thing, it's how my husband was suffering and, eventually, after three weeks, he was on a drip, he couldn't swallow, em, in fact the last memory I have of him really is his sitting in the hospital bed with his mouth open, a blob of ice cream on his tongue because he couldn't swallow it and... it was quite upsetting.
Andrew -
Yeah.
Jackie -
And. And, eventually, they got him on a drip and he started pulling it out, it obviously bothered him, and he kept pulling it out, and they did say to me then, do you mind if we leave it out? And I said no. And he just died in a couple of days. And I just feel that so much suffering could be avoided if they had only acceded to my request at the beginning. You know, obviously, I love him very much, I didn't want him to go, but I knew that he was never going to get better.
Andrew -
That he was going to go, so it was about, sort of choosing the best way for him and to a certain extent for the people around him as well, so that, you know, people are not left with this anguish and this discomfort that we've heard Norma and others verbalise this morning. Er, Jackie, thankyou.
Love to hear from you this morning. If you've got experience of the Pathway, either way, good or bad, who do you think should make the decision? At the end of your life, do you want doctors and nurses to check you out, have a look at you and think, they're not going to make it.You know, it's time to put them out of their misery. Or do you think it should be about the family thinking what you would have wanted. My numbe is 0845 900 1041. More of Norma's story to come between now and ten for you.
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Andrew -
Lesley, good morning.
Lesley -
Morning Andrew.
Andrew -
Morning to you, so we've been chatting since the start of this morning about the Liverpool Care Pathway which, I suspect, is a thing a lot of people had never heard of until they turned on the radio this morning. Em, tell me about you and your mum.
Lesley -
I would like my mum to go on the Liverpool Care Pathway. She has severe dementia and I have been told that she is in the last phase and is, effectively, dying. She is lying in a foetal position, she can barely swallow although they still continue to try to feed her, her blood pressure and temperature controls are up the chute. Yesterday, I was with her and she collapsed. And they have told me that they intend to treat her uncontrollable blood pressure, and treat her with antibiotics for the rattle in her chest. When I asked that they not do these things, because we have reached the end - there is nothing of my mother left - but I am not the next of kin, my step father is and he does not wish this to occur, and they also said that the Liverpool care pathway is something only done by a hospital and they cannot do this. They have to just make her comfortable and wait till the inevitable.
Andrew -
So...
Lesley -
So my view is that antibiotics and treatment of blood pressure are not the inevitable; they are prolonging what is, in effect, an extremely distressing situation
Andrew -
Mmm. And what's that all about, then? A different, you know, hospitals, different healthcare facilities take different views about this.
Lesley -
I don't know. She is seen by a geriatrician who visits the home that she is living in because she can do nothing for herself. Em, I find... I think that if she was transferred to hospital fairly quickly, a decision would be made to not prolong life, but I don't know whether it's because it is a care home, whether this...but a doctor could reach this decision and i would be in agreement with it. My stepfather is elderly and in ill health. I know he doesn't want his wife to die but, at the same time, she will never recover; there is nothing left.
Andrew -
Mmm, what comes through the situation you're describing is, you know, right now and what (Lesley interrupts) Everyone has such a different view about it don't they?
Lesley -
They do. I mean well I have power of attorney. I don't want my mum to die but I know there is nothing there left. She's not the mother I had and I think it's awful. I do understand that he cares for her but I just think that she should be allowed to go. And yesterday, I wished to her, mum, don't stay alive for us. Please go. You know, she has a Christian faith and I would say to her, you know, the time has come for you to go elsewhere and have your future life there, not here in this pain. you know, I... I mean, I'm not saying she's in pain, but she's grey and if you could see her, you would not like it.You wouldn't wish it on a worst animal..
Andrew -
What...
Lesley -
You would treat animals better than they're treating than my mum.
Andrew -
Is it something you've ever talked about with her?
Lesley -
She didn't accept that she had dementia. And, as a result, she would not take the tablets. She felt there was nothing wrong. By the time a diagnosis was finally made, em, it was too late really to do anything and, in the last year, she has deteriorated slowly, but in the last four weeks since before Christmas the deterioration has been quite remarked and now she's nursed in bed. Don't get me wrong. The care home are wonderful people and they do a wonderful job and she's looked after, she's clean, you know, there's nothing wrong with their care but I just feel that the doctors should say, don't treat her with antibiotics, we won't treat her blood pressure, we will let her go. But they seem to feel that they cannot do this. I don't know whether this is... whether they're worried about a reaction but, because I am not next of kin, although I can go and see her and they tell me what is happening, I am not able to make those decisions and I think that those decisions need to be made. We need now to say goodbye.
Andrew -
So, what's sort of ironic if you like about the thing is that it comes down to the same principle, that you want to be in control and everyone listening will hear the situation you're in and understand why and the reality you find is that the medics are in control.
Lesley -
Yes, I do find that...
Andrew -
In your case, they're saying, no, no, we're going to treat it.
Lesley -
Yes, well... When I suggested that perhaps the time had come not to do this, they looked at me as if I was suggesting murder. And I thought, we're not going to get better; this is... It's, it's... If somebody had had a stroke, and there was a chance of rehabilitation, I would take that with open arms; I don't want her to die, but I'm aware now she doesn't recognise me. Her eyes follow anyone in the room but there is no knowledge behind it; there is no thought process there anymore.
Andrew -
If there was, what do you think she'd make of the conversation that we're having now?
Lesley -
I think she'd be horrified. I think she would...
Andrew -
By... Which bit of it?
Lesley -
I think that she would not wish to be alive like it. She wouldn't. She just would not like to be what is, in effect, a vegetable in a bed.
Andrew -
Well, how did you... Well, you clearly feel very strongly about it and everyone can see that. What are you going to do next, Lesley?
Lesley -
I'm waiting to hear this morning. I have requested that they don't treat.I am waiting to hear whether her blood pressure has come back under control under her own steam. I'm hoping... I've made my wishes known, but that's all as far as I can do.I am not involved in the clinical process. I can only ask them but often they just say, well, a doctor has made a decision.Unfortunately, I do not have a very good relationship with my stepfather and so it is very difficult. Em, I understand how he feels; they have been married a very long time and he cares for her but I cannot see that what is there on that bed is now the person that he married and loved. And I think that it's a shame. I just think, you know... I'm just hoping she is listening to me and I'm praying every day that really and truthfully the end will come.
Andrew -
Yeah...
Lesley -
And that because I have a Christian faith, my wish that, you know, the end would come. I... I believe in the sanctity of life, I do. I believe in all the other bits and pieces, but I'm not so sure that I would want euthanasia. I feel that the time has come when there is no quality of life there anymore. Now, someone might say, how do you know? But she no longer recognises me. It's an automatic... It's an automatic reaction.
Andrew -
When it's your mum, you know.
Lesley -
Yes.
Andrew -
Em.
Lesley -
I... I'm just, you know, I'm just saddened that this happened. I mean, I do know that there are plenty of people out there who feel that the Liverpool Care Pathway is not the right thing for them and I think that each case...
Andrew -
You just wish it was an option.
Lesley -
should be taken on its merits.I wish it was an option here to allow her to go
Andrew -
I'm grateful you've talked about it, Lesley. Our love and thoughts are with you because everyone can, you know, hear the passion and the emotion in your voice and the situation you're going through. Look after yourself, won't you. Keep us in touch with what happens.
Lesley -
Thankyou.
Andrew -
Lesley in Finchampstead.
......................................................................................
Andrew -
Here's Heather. Good morning, Heather.
Heather -
Good morning, Andrew.
Andrew -
Good morning. A lot of talk this morning about the Liverpool Care Pathway which you have had experience of. Tell me.
Heather -
Unfortunately. My story - My mum lost her life in hospital four years ago. She went in for an operation on her back which she had waited a long time for in considerable pain. The operation went very well, but unfortunately the after care was not great, em, and it resulted in a devastating brain haemorrhage which, you know, really wiped her out. Em, she was moved into a side ward and we were told they were doing a favour putting her in a little room. Subsequently, the chaplain came to visit us and they told us - he told us that mum had been put on the LCP. We didn't know what he meant because it hadn't been discussed with my dad, my sister or myself. Em, a nurse came and sat at mum's bed and explained what this regime was and she assured us that mum would be made comfortable and wouldn't be in any pain or distress. Em and mum was given a morphine pump and my sister specifically asked that the staff would make sure that this morphine pump was topped up. Unfortunately, this didn't happen; it ran out in the middle of the night and mum was still fighting to stay alive. Em. To get the pump topped up, you have to get two signatures for it to be administered and by the time that actually happened, they brought the morphine, mum had just died. Unfortunately for her, it wasn't a dignified death and it wasn't without distress. My mum and sister were with her and that will stay with her the rest of their life.
Andrew -
So, in your case, it sounds like you were comfortable enough with the idea of her being on the Pathway, but the nuts and bolts of how that was working weren't handled properly.
Heather -
Absolutely. I mean, I wouldn't say that, you know, the LCP is not the right thing in the appropriate circumstances. You know, mum... mum could not have survived with any quality of life at all after that, but if that's the route we're going to go down, then the staff have got to be well trained, they've got to stick to the procedures for everyone's sake because the experience doesn't leave you, you know, it lives with you for the rest of your life. So, I think we've really got to be so mindful we do all the right things, talk to the right people and make sure everybody knows what's going on
Andrew -
Did you feel that you'd decided, or that if your mum had been able to have a hand in the decision, that this was the right journey for her?Or was it just a decision that was made for her?
Heather -
Em. The decision was made for her by the staff without reference to us. Em, had they talked to us, given what we were shown and how much brain damage she had then had, the kindest thing was to quietly, I think, help her to end her life in a dignified way.
Andrew -
So, you're all on the same page, at least?
Heather -
Yeah.
Andrew -
As to what to what...
Heather -
Yeah, you've got to do it the right way because, you know, when you sit there and you see someone struggling for life, it is terribly distressing and that shouldn't have happened. It really shouldn't have happened.
Andrew -
No, I understand that. See, and I... Just finally, had you talked to her about it because, I've said this on the air before, I can't imagine ever wanting to be in the situation where I would want to die. I think, I would want to, you know, be alive by any means possible for as long as possible because I find the idea of dying so frightening. But that may be because I just haven't come up against the horrors of, you know, of being alive in the sort of situations that people have been talking about this morning.
Heather -
Yeah. Yeah. I think, no, we hadn't talked to mum about it. Em, certainly my dad didn't talk to mum about it. And they were one of the generations who didn't even talk about these things. Em and I suppose, yes, we should all talk about what we want to happen if we get into that situation. Em, because I think that if we could be, you know, stand back from it, we would all say we don't want to stay alive in a state of, you know, a vegetative state. I mean, I do always worry about them saying well, brain dead and that's it and there is no more life, and we do see people who manage to come back from that, but I think, on the whole, if you're going to be a vegetable with no quality of life whatsoever, em, I don't think anybody would really want to be like that. Em, because that isn't a life, is it?
Andrew -
Heather, thankyou very much.
Heather -
Okay, you're welcome.
Andrew -
That's Heather calling the show
......................................................................................
Andrew -
We started the show with Norma, who I met in Newbury yesterday, we've been hearing her story and her take on the Liverpool Care Pathway. You've been listening to the show, Norma, everyone else joining in with their story.
Norma -
Yes.
Andrew -
Which is exactly what you wanted, isn't it, everyone else to share what's happened to them?
Norma -
Yes.
Andrew -
What have you made of what you heard?
Norma -
Well what I've made of what I could hear, a few people who are very, very ill and their family want them on it and they been told about it and they know exactly what it means - that's fine. But my husband, I wasn't told about it, my husband didn't want to die, he wanted to die in his home. He'd been ill for three years and every time the doctor come and the district nurse, he told her he wanted to die in his home. Why wasn't he allowed to. His doctor could have come out and given him the injection then if he had wanted it and I'd known about it. Another thing is, I've been round my doctor's this morning, made an appointment with the manager because I'm going to tell her I don't want to be put on the Pathway.
Andrew -
To make sure everybody knows
Norma -
To make sure, make sure, and also...
Andrew -
Norma. No Pathway for Norma. We want that written everywhere, don't we?
Norma -
Can I just say something else, darling?
Andrew -
Yeah, go on.
Norma -
The leaflets, I told them round the surgery, they didn't know a thing I was talking about the receptionist girls. Why aren't the leaflets put in here so old people know about the Pathway?
Andrew -
So people understand what it is. (Talks over Norma) Well, there is a leaflet, because I've seen it and what we need to do is make sure it's put in places so everyone can have a look at it. Norma.It was really nice to meet you yesterday...
Norma -
Thankyou.
Andrew -
And I'm pleased you were able to air your story. Thankyou ever so much.
Norma -
Oh, lovely, dear, I'm so pleased it's getting publicised. Thankyou. Bye-bye.
Andrew -
That's Norma in Newbury. Thankyou Norma.
......................................................................................
LCP Mark XII
We're now on version twelve. That means it's twelve times they've tried to get this right. What wrongs have they buried?
Dear Secretary of State,
Are you out of the loop with this as well as the CQUIN payments?
You may agree with euthanasia; you may not agree with euthanasia. It is quite clear, however, that the LCP is being used as a euthanasia tool by clinicians grooming families into blithe acceptance. Be bold, be brave: just come out and own up to what is happening. We are in the EU after all and it's okay over there to put people down...
The EoL programme is a death-induction programme. This is why the LCP is the LKP - a Licence to Kill People.
Please pay attention!
You may agree with euthanasia; you may not agree with euthanasia. It is quite clear, however, that the LCP is being used as a euthanasia tool by clinicians grooming families into blithe acceptance. Be bold, be brave: just come out and own up to what is happening. We are in the EU after all and it's okay over there to put people down...
The EoL programme is a death-induction programme. This is why the LCP is the LKP - a Licence to Kill People.
Please pay attention!
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