RIP – Liverpool Care Pathway

There are some images that you just can not erase from your mind right?

I have quite a few.

One of those images is watching the face of a woman as I stood in a room with my hands behind my back, watching her, a daughter holding the hands of her father, as he took his last breath, and passed away.

Another image I will never forget is the face of another man, whose hand I was holding and whose face I studied, as he too moved on from this life to whatever it beyond it.

I will never forget watching a lady, whose family were travelling back from the States to be with her, battle with her breathing, and eventually become too tired to keep the fight. I sat vigil, in place of those loved ones who were in a plane above the seas. There was music playing, and I laid a rose by her hands as she slipped away.

Another image in my mind is watching another scene unfold one evening, as another person crippled with illness and disease died. That day I cradled and comforted them and silently cried as they took their last exhales. A few hours earlier, in the same shift I had nursed with a colleague someone else, and stood back watching as family said their goodbyes, and as she slipped away. By 8.30 that evening, myself, and my team (I was the Senior Care Leader) and the Clinical Nurse in Charge sat in the empty dining room, crying. Together. We cried. Myself and the Nurse went out and smoked, and smoked. And we cried, and wondered if we could keep doing what we did. But then a pager went, the ciggie’s went out, the tears were dried, and the night continued. I stayed on to support the night shift coming onto duty, and on we went …

On and on I went, day in and day out. Sitting with people as they died. Comforting people, crying with people, laughing with people, remembering with people. Doing life with people, more importantly being part of the process of doing ‘end of life’ with people.

Because we are all born. And we all die. And for that season of my life, my purpose was to be there in the midst of that, in the midst of the pain, the darkness, the journey of moving on from this life to another.

See, some of you know me as @fragmentz who writes and tweet’s a lot about nothing much, which is fine, because that is what/who I tell you I am. Some of you will know me as @fragmentz who was a nursery nurse, a youth worker and a church worker. And then some of you will know me as someone who has just spent 5 years working in a nursing home, which as well as providing care for the elderly, also provided end of life care to anyone who was dying. That meant we cared for, looked after, nursed, supported and provided emotional love to people of all ages, from all backgrounds and situations who were dying.

Initially my job was as a Senior Care Lead, working ‘on the floor’ providing the practical care that people who are sick need. That was me in a uniform changing beds, bathing, washing, supporting people to eat and drink, administering medications, being part of a team of people ensuring the very best of care was provided so that the people we were nursing were comfortable. My role involved liaising with the Nurse in Charge, with Dr’s, with other healthcare professionals, families, and most importantly the patient themselves. It involved ensuring the staff I worked with kept the very highest standards of care possible and leading by setting a good example. It was tough, really really tough.

What would be tougher would be then moving into a more ‘pastoral role’. I was asked to become the ‘activities coordinator/pastoral overseer’ and became responsible specifically for supporting the people we were seeing coming to us specifically to die.

And this is why I am writing this blog. Because then I became so much more involved in the ‘big picture’. Became so much more involved in the holistic element of caring for people, especially those who are dying. I became the person who had the time to sit with people and their families for hours on end. I was the person who had the time to sit with and explain options, talk about the next stage, what the Dr’s said, what could or could not be done, and so it goes on … I was the person to support the patients and their families see through whatever was going to come, and for those people it would be death.

Because that is why they were with us. That is why they came to us, either from home or hospital, so that they could be cared for well in their last few days. Because they were in them. Maybe months, weeks or days. Mostly weeks and days.

Today we have seen the review of the Liverpool Care Pathway for dying patients Independent Report released. And its recommendation is for it to end. To be phased out by the end of the year. This is from the Panel Press release …

‘The Liverpool Care Pathway should be phased out and replaced by an individual end of life care plan, an independent review led by Baroness Julia Neuberger recommended today.

The review was commissioned by Care and Support Minister Norman Lamb in January 2013, because of serious concerns arising from reports that patients were wrongly being denied nutrition and hydration whilst being placed on the Pathway’.

For those who don’t know – ‘The Liverpool Care Pathway for the Dying Patient (LCP) is a UK care pathway covering palliative care options for patients in the final days or hours of life. It has been developed to help doctors and nurses provide quality end-of-life care’ (source: Wikipedia)

And it is something I have experience of working with. It is something I have seen implemented properly, and something I have seen working well. It IS a tool that when used as it was designed to be used can ensure that the suffering and pain of someone who is dying is kept as minimal as possible. That they are comfortable, pain free and are afforded their last days and hours in dignity. Which is what my role was there to ensure, that people were comfortable, pain free and dying in dignity. It is a tool that when used properly and well can be individual, can be done in conjunction with personal care plans and can ensure that the care a person receives is personalised to them.

Today the social media has been awash with comment. Comment, views, thoughts and opinions, from some people who know a bit about it, and some people who know little about it (and a few people who know a lot about it). Much of the conversation has been negative. I have tried to engage with people. I have tried to engage with the person who suggests that LCP is ‘evil and unchristian’. He knows this because they heard this on a radio phone in where a few people spoke of their negative experiences. I’ve seen tweets that say outrightly that nurses, care staff and people who dedicate their lives to caring for the dying are murderers, sick, have no compassion, don’t care, should die themselves or be thrown into jail. I have tried to engage with people who are out to criticise and who refuse to actually research, learn and understand what LCP really is, what it really stands for and does, and why.

The report acknowledges that the panel ‘recognised that, when applied correctly, the Liverpool Care Pathway does help patients have a dignified and pain-free death. And they support the principles underpinning it’.

So, what is at fault here? Really? Is it really the Liverpool Care Pathway which has been implemented successfully for many thousands of people enabling them to die in comfort, and without pain, or is it lack of understanding, training and the misuse of something? And don’t get me wrong, where this tool has been used and abused, the outcome is horrific. Wrong and horrific. I do not doubt or deny that. But why is that not being challenged and dealt with? Why are we seeing, because of the failings of a few, the entire LCP abolished?

This can only be a bad thing. It IS a bad thing, and a very sad day for end of life care.

If you look deeper you will find the tweets that talk about how the last days of ‘Mum/Dad/Brother/Sister’ were kept dignified, and that they were able to pass away from this life to another without battle. Without pain. And what it meant to the patient, and to the families.

If you look deeper you will find the stories of people who were helped immensely on the LCP, families who have nothing but praise for and the staff who work tirelessly. But you have to dig deep, because at the moment the over riding theme we are seeing talked about is about ‘starving people to death’ or ‘people being dehydrated to death’.

Lets be clear here, if thats what you are reading in relation to LCP, then that IS NOT THE LIVERPOOL CARE PATHWAY BEING IMPLEMENTED PROPERLY.

Never once did I see anyone refused food or water. That is not what it is about. Whatever the media or the hype might tell you.

What is about, and what we must must must make sure we have is guidelines in how to ensure that those who are dying, who are already at the point of no treatment (LCP is also not about refusing treatment, it is something implemented once that decision has already been made), have the right to die well.

We have midwives and processes to bring babies into the world.

We must have processes and people dedicated to ensuring people pass out of this world well too.

I’ve read some damning comments today. Please do not tar us all with the same brush. There are many compassionate people out there working day in and day out to make a difference to the the most very vulnerable, the dying.

Another image has entered my mind today whilst thinking/talking/reading about the LCP.

Its of my dear dear Gran.

I remember cradling her for hours on end, one night, in the hospital, the night after she had been told she was dying. That there was no more treatment left, and that it would be days, not weeks. I sat with her all night, in a ward, in a hospital bed as she shook and screamed in pain. As she cried in delirium because her body was torturing her. I cried as she cried in pain, and prayed for it to end. For the pain to end. Eventually she was given enough pain relief to stop her screaming. But we could not touch her, because her whole body was consumed by it. Even to gently stroke her hand, in her sleep she would wince. 12 hrs later, the Liverpool Care Pathway was commenced. After much debate as to whether or not she could be moved, she was transferred to the nursing home that had been her home for 7 years. And on the LCP she remained.

For the few weeks that she clung on, with the LCP in place, she was able to be made comfortable. She was given water when she needed it. She was given food when she could take it, but she was equally not forced when she could not. She was not subjected to endless blood pressure checks, blood tests, Dr’s coming round for ‘this and that’, endless routine tests to see what else could be done. She was allowed to rest, and get to the point of being totally pain free, so we could sit with her, hold her hands, laugh and reminisce with her in her moments of awakeness. It meant we could spend some precious time with her at peace, instead of seeing her screaming out in pain.

That is what the Liverpool Care Pathway ensured. How can that be wrong?

The last image that has entered my head tonight is a picture. This picture … handsThe right hand is my Grans. Taken before she became ill and died. But a picture I have and will always treasure of her.

Please please remember her and the many people who have passed away, pain free and in dignity because of the implementation of the LCP before you rush to criticise it too heavily. And the staff who work so hard and compassionately to make sure it can happen that way.

death.

I didn’t realise that it has been over a month since i last wrote on here … when i was taken into hospital a few weeks ago, and then ended up having quite a few weeks off work, i thought i’d have so much time to be able to catch up on blogging, however i dont think i realised fully the extent of how unwell i had been … (much better now!) so, its been a bit quiet here, but i’m back …

i hope this post finds everyone well, as ever … and that February is proving to be a fab month for you …

for me, its proving a challenging time, but then what would my life be if it was not a challenge. I’m not sure i’m ever destined to have one of those ‘easy lives’ (do they even exist? – i think they must, but just not that i’ve seen yet).

when i wrote my reviews of last year, and mentioned the fact i’d had some breathing problems which has inspired me to stop smoking, i dont think i reckoned on the beginning of this year being full of the fact that it has stepped up a gear.

to that end, walking home one day from work, a few weeks ago, as i do most days, i found that i simply could not breathe. i could not get my breath, and by the time i got to my GP surgery was turning a funny colour. i’ve never been ‘blue lighted’ into hospital before … and if i could remember it i’m sure it would have been very exciting, alas i dont. i wish i could say it was ‘interesting’ to experience the immediate emergency care i received that day, and a couple of days later when the same thing happened again (while at work this time – a bit embarrassing being stretchered out of the place you spend most of your waking hours) but i also don’t really remember that, all that well. Of what I do remember however and can comment on, is how amazing all the healthcare professionals who have looked after me were. From my GP, to the paramedics, to the emergency care teams at the local A + E and the criticare staff, and then the normal ward nurses and doctors, everyone was brilliant.

so here I am now, having to take daily medication and inhalers, and attend endless appointments with Respiratory Nurses and Consultants, and my regular GP. How grateful am I for the NHS? VERY! You often hear the crappy stories, and trust me, working in the healthcare profession myself, I am not blind to them and the realties of when poor care is provided, HOWEVER i think it is so important to also highlight the GOOD care, the good experiences, the people who work in hospitals who are professional, committed, kind, caring, compassionate. One moment I do remember, is the second time, a few days after the first incident, is coming round in the a big scary room in A n E with lots of equipment around me, and needles in my arms, and tubes up my nose (oxygen) and bursting into tears … it hit me where i was, what was happening, and how crap I felt … I wont ever forget a nurse, whose name was Lisa … standing by bedside and holding my hand, comforting me. She stayed with me for about ten minutes, until i calmed down. She provided tissues, and kind words. THOSE PEOPLE ARE AMAZING.

Anyway … the reason why i’m rambling on about all of that is that the following days that followed were days that kept me inside this hospital, on a ward, in a bay with three very elderly people (hell yeah could i tell you some funny stories about them, especially about the one who tried to get into my bed nearly giving me a heart attack!) … and that meant, being confined to a hospital  bed/chair I had not alot to do, other than rest, watch crap tv, listen to music and look out of window and think.

It was the latter I did plenty of … thank goodness for good music/ipods/phones and the lovely view from the 8th floor is what i say!

So i thought aplenty i did … and despite my often tweeted tweets about being thick and rambling on alot about nothing (which I do do alot of, sure) I do actually sometimes think … and the topic i could not stop thinking about was life and death.

as some of you know or may have picked up from previous blogs or twitter if you follow my feed, i work in a home with mostly elderly people, but a home that specialises in care for people who are dying … so they may be elderly and gradually declining and pass away through age related issues, or they may be people of all ages who come to us to be cared for in the last hours/days and weeks of their lives if they have terminal illness. We see and care for a huge range of people, with a huge range of needs, and over the years I’ve worked various roles in the same place, most recently as a senior member of the care team, and presently as the activities co ordinator/overseeing the pastoral and emotional care of our residents/patients. Its an incredibly challenging role, thats see’s us/myself on a very regular basis being with people as they are dying, as they do die, and afterwards. In all of this we also care for and provide support for the relatives of the person we are providing the care for We try our very hardest to practice something called holistic care which takes into account the person as a whole being and their situation, and their families come into that too. For some people, they have no family, and we the staff are the only people they have.

As part of my job, I find myself very closely involved with these patients in all sorts of different ways. Sometimes its spending time with the distraught families, comforting them, chatting, providing endless tea and coffees as they vigil their relative, sometimes holding their hands … sometimes sitting with them after their loved one has gone. Sometimes it advising them on what to do, whats next, where to go from there, sometimes is about just being a listening ear. I spend many hours with the patient/resident themselves, doing whatever they want me to be doing, sometimes its playing music, sometimes its reading to them, sometimes is just chatting. Sometimes its just sitting there, and listening to them. I also stay with residents who are gravely ill, and who may be close to going, so they are not alone, if thats what they wish. So i find myself sitting with people, and holding their hands (usually when they don’t have relatives or their relatives are not present) as they take their last breaths, and float into whatever comes next for them after death.

I cant lie and say my job does not impact me … it does, hugely. For example, yesterday I spent many hours with someone and with their relatives, a family we have had contact with for a few months. And i did sit at my desk just before going home, and shed a little tear. Because in everything my life has involved, one of the hardest things i find i have to do is face people dying so regularly, and have to support/console and try my best to look after a family who is grieving, in their very many different ways. Seeing pain on peoples faces makes even the hardest heart (i used to think my heart had been hardened by life) soften. Maybe my heart is not as hard as it once was (thats probably a whole different blog) …

anyway, so, back to being on a hospital bed on the 8th floor, with an amazing view over fields and roads, and at night houses all lit up, all I could do, as i often do when walking home from particularly challenging days at work, all i could was think about death and dying. Especially because, although I dont think I was going to die in the emergency room, when you feel like you cant breathe, it does make you pretty scared, and think you might possibly die …

and all i could think of then, and in this bed, and whilst thinking about all these people i look after and support was, I’m not ready to die yet. I dont want to die. And what will happen when i do??

A few years ago, all i wanted to do was die. I could not cope with life. It wasn’t what I had dreamt it ever to be. It was what I thought it should be, and i could never see a way of getting out of the big black hole I was in … I could not cope with having to deal with being a survivor of childhood abuse, dealing with the my biological father being who he is and behaving the way he did, and still tries to now, not that i’ve heard from him in a long time. I could not cope with being assaulted in a city I was living in, that I had wanted to try and build a life in. And then moving back to be nearer my Mum and lovely stepdad did I ever imagine finding myself feeling so isolated, turning to alcohol and self destructive behaviour that I still have the scars from now … and trying to end my life. I never thought life would be the way it has been (and i could write so much more about things i have experienced but i dont want to depress you) … and that i could be a normal person who wanted to live. because I wanted to die (i wrote a blog about wanting to die if you want to read that).

however, now I find myself in a place, where I dont want to die. I want to live. I want to have life.

But I am faced with death on such a regular basis that I cant switch off from it. And that leaves me with big questions.

what is life about? what is it for? what are we doing here? what is the ultimate purpose of being alive, and what does happen when we die?

where have all the people i’ve sat with and held the hand of as they have passed from this earthly life into something gone?

and where will i go when i die?

and so, that is ultimately what I spent my time thinking about while I was in hospital (cheerful i know – and please dont think I am in the depths of despair right now, because i am not, these are things i often think about, cant avoid)

so, anyone got any thoughts?