meeting with GP to sign No Hospitalisation.

[jan1962]

Hi All,

went to visit my MIL yesterday before her GP appeared. the care staff told us that she was in bed as she was very tired, they also to me that she had not eaten or drank anything. they had a glass of orange juice that had been thickend and i said that i would try and get it into her.

went into her room and she was sleeping, so we sat there waiting for her to wake up which she did. i sat on the bed with her and tried to encourage her to take the juice but all in all i got about 10 to 20mils in to her.


she seems to be reaching out to things that are not there, she is also again racked with pain, they are giving her Oramorph prn for break through pain. she was soon back asleep so we left her room.

the GP turned up to meet us and to go through the document and asked my FIL if he had any questions and all he could say was if he had any worries he just asks me as i can usually answer them and he had just finished reading the print outs i gave him months ago and things were a little clearer.

the GP then explained the Liverpool Path Way, and that there had been negative press about this of late, again i explained that i did not feel that there is a problem with this as long as everything is done correctly.


does anyone on here have any views on the LPW.



thanks

jan1962

 

[Butter]

As I understand it the LPW, if everyone understands it properly and administers it properly, is the most civilised and humane way for us to reach the end of our lives. I am sure there will be people on TP who have been involved. My mother was put on 'palliative care only' and I am not sure what is the difference between that and the LPW.

 

[nicoise]

Dear Jan1962,

Both my parents were put on the LCP (LPW) (with syringe driver administration of pain relief, sedative and anti-emetic medications) in their final hours. Their situations were different, but they were both dying. My father was on it for 36 hours, my mother for 12.

Neither could eat nor drink, so not having food or liquid was not a matter of withholding, but unnecessary. Both had their mouths moistened with sponge swabs; neither sucked as if thirsty, but their mouths were kept clean and moist. They were both regularly checked by nurses, and given personal care and turned. We were with them both virtually the entire time.

As you say, much has been in the press recently, of a negative viewpoint. My personal experiences - the first time 9 years ago, the second 18 months ago - was that it was administered appropriately and managed with respect and compassion. It enabled any pain or anxiety to be managed; if death came sooner as a result of medication, it would only have been a matter of hours (probably) and was not an issue of inducing or hastening death, but reducing suffering.

For myself, information and communication re the LCP are key; along with a true understanding of what is happening with the ill or dying person. Sadly it may have been inappropriately used on some patients; and relatives not properly informed and understanding of the true situation in other patients, which has given rise to the negativity surrounding the LCP.

 

[FifiMo]

Hiya Jan,

My experience to the LPW is the same as Nicoise, with so many similarities. Another thing that I recall is that it did mean that when the family were around and there was a nice calm atmosphere, that there weren't too many interventions by the medical people. In fact, they were very discreet, came and used suction machine when we asked them to, that kind of thing and even, at their own expense, went and made tea and sandwiches for everyone throughout the night. The end result was a peaceful passing which helps a lot as for a long time that is the first thing you seem to recall isn't it.

I know that others experiences on here haven't been the same and circumstances haven't been pleasant for them to have to tolerate. Whatever the approach - give it what label you want - my personal view is that they should do whatever is necessary to ensure there is no pain, that they are as comfortable as possible, and they are treated with dignity and respect. Not much to ask for really in the circumstances is it and by delivering that - they can if nothing else help those who are left behind to heal.

Fiona

 

[Pinkpea]

I am sorry to read that your MIL is now fading.
I work in palliative care and it saddens me when I see the a "tool" designed to promote dignity at the end of life has not fulfilled its purpose. If it is used as intended, and most often it is, it can enhance the quality of the person and their families life at a most distressing time. It is not intended to withhold treatment but to encourage appropriate treatment. It is also only intended to be used in the last hours or days of a persons life, not the last weeks. I think this is where it has been poorly implemented and the discrepancies over withholding fluids etc has arisen.
In an ideal world there shouldn't be a need for the LCP but the medical profession has a hard time acknowledging they cannot "save" everyone, but by implementing the LCP it gives permission for the professionals involved not to push push push inappropriate interventions and medical interference.
I say hats off to your GP for thinking ahead and allowing nature to take its course with your MIL. It sounds as if he is in tune with MIL's needs. Please ask him to sort out her pain relief, she could have (not knowing her actual situation)a stronger oral morphine or it could be administered via a patch, or if necessary a syringe driver. Any increase in opiate drugs like morphine will make her more drowsy but should make her more comfortable, it is a dilemma but the aim should be to reduce pain not to cause sedation. If you think MIL is suffering keep shouting until she is peaceful, if the GP has to visit and reassess several times in one day then so be it, he can write a prescription that can be incrementally increased as necessary.
I think you have been given good advice in the previous posts. I hope what I have said also helps and that your MIL and the family are able to find peace and comfort over the coming days. thinking of you.

 

[Grannie G]

I have no experience of the Liverpool Pathway Jan but it sounds effective if it is carried out correctly. I am sorry it has come to this.

 

[winda]

Dear Jan, I am so sorry you are going through this at the moment. I know how distressing it is.

I have had recent experience of the Liverpool Care Pathway with my husband who died about a month ago.
He could no longer eat or drink and he eventually developed pneumonia. The choice was to have him sent to hospital for rehydration and antibiotics to be administered, or for him to be kept in his room with morphine administered by a syringe driver and with his family around him. We chose to keep him out of hospital.
If we had chosen hospital, they would have quite likely revived him but only to be possibly more confused than before and still unable to eat, and then possibly needing to be returned to hospital again and again.
The LCPW seemed to me to be the most humane choice and as Butter has already said, it must surely be the same thing as palliative care which is used for many conditions where someone is determined to be terminally ill.

As long as it is used responsibly I think that it is definitely the best choice and at least afterwards the family can remember a peaceful ending and in our case some valuable quality time. We were also able to gently play him some of his favourite music some of the time.

I wish you all the courage and strength you will need to get you through the next few days whatever you choose to do.

Thinking of you xx

 

[Butter]

I am so pleased all the posts so far have been positive. My mother was hospitalised once for intravenous rehydration and anti-biotics. My brother and I thought this was a mistake and she suffered for nothing. The second time that this became a possibility my father was more evasive of the situation (in other words he had no conversations with anybody and the staff only talked to me). I told the staff I was not in favour of hospitalisation. They said (unanimously) that they were not either. My brother emailed me to say he was not either - but he would understand if I felt unable to say that.
So she stayed in the CH. Then I had to make a HUGE FUSS to get proper pain relief. And this was April 2012.
I remembered her telling me how much she loved morphine (when a child, once, and once after major surgery when a young woman) so I felt confident to insist and insist and insist. And I remembered my small son's relief when he was given it in A and E with a shattered arm.
I had to ring the GP and insist. I had to get the CH manager up to her room and insist.
Looking back I only wish I had shouted earlier - and louder.
This country (UK) is conservative about pain relief.
Once my mother was clear of pain, her head cleared too. Her head was clearer than I had known for many many years. And as my son and I were able to sing her her favourite hymn (she was a devout woman) I can say, with confidence, she enjoyed her last moments.

 

[winda]

Butter's experience with her mother makes me realise how lucky my husband was that his CH believed the LCPW to be the right way to deal with the end of life. Because of this I did not have to fight for pain relief for my husband, it was all put in place automatically.

I witnessed my mother being kept alive by various means, after a major operation and several interventions. For six months she was in and out of intensive care. The intensive care staff didn't approve and told us so. It was obvious that she would
no longer have any quality of life, to everyone except the consultant she was under, and her torture continued. We were helpless to do anything.

I was determined that my husband would not suffer in the same way and I am so glad that the LCPW was implemented.
I think that with all the advances in medicine we find it increasingly difficult to 'allow' people to die and the medics are worried about litigation, so they need us to reassure them that this will not happen.

 

[Pinkpea]

I'm sorry to hear your mum didn't get the medication she required quickly Butter, but relived that so many have had positive experiences of LCP's I could talk for hours about end of life care, having professionally witnessed both the good and the bad situations, but I could easily get side tracked and don't want to deviate from jan's original request about the LCP.
I thought it might be useful to some to see the current statement about the LCP written by Marie Curie Palliative Care intitute which summarise the guidelines that should be followed http://www.mcpcil.org.uk/media/livacuk/mcpcil/documents/March-2011-LCP-Briefing-Paper.pdf

 

[Butter]

I could talk for hours about end of life care, having professionally witnessed both the good and the bad situations,

I think many of us would find that helpful. There was a discussion about it on Newsnight the other night. There were two main points:

1) LCP has been misunderstood too often

2) many of us in the developed world find it difficult to accept the fact that we die

 

[winda]

I think many of us would find that helpful. There was a discussion about it on Newsnight the other night. There were two main points:

1) LCP has been misunderstood too often

2) many of us in the developed world find it difficult to accept the fact that we die

I agree that it would be helpful for people to hear more about what can happen at the end of life. It would help people make informed choices.

 

[Carolynlott]

My experience of the LPW is also positive - Mum was in a lot of discomfort and the GP said there was no chance of her condition improving. I was just so glad that it eased her pain and she had a dignified death, which was also a lot quicker than if she hadn't been on it.

C

 

[Pinkpea]

Talking about dying

If you think that it would be helpful I will put together a post and start a new thread. I will take some time to gather some quotes etc and I will run it by the mods first, because although I am experienced I am not an expert. I am a Marie curie nurse and I visit people in their homes in the last few weeks of their lives to support them and their families.
I'm about to go away for a few days so it may take me a week to do this properly. If anyone has any urgent questions please feel free to pm me cause I will be able to check in here once a day, if I can help I will or I may be able to point you in the right direction.
I have to agree that being able to have a discussion about dying before it becomes imminent can often help alleviate some of the fears.

 

[Butter]

Yes please. Certainly this would help me. One day I am going to die.

 

[Pinkpea]

Yes please. Certainly this would help me. One day I am going to die.

I am just chatting this over with the mods before I post anything. I do not want to overstep any marks.

 

[winda]

I think this would be really helpful. The end of life is something we all fear but is something which is rarely spoken about in our culture.