RIP Liverpool Care Pathway

There has been much talk of the Liverpool Care Pathway on the news this week. It looks as if it may come to an end and I, for one, say hurrah. When I first heard about it I thought it was a great idea. Using the Hospice model people should be allowed to die with dignity, surrounded by family rather than machines. However it didn’t always work out that way.

I know of one woman who found out that her husband had been marked down as DNR without any conversation with her. Perhaps they did speak to her husband but as he had dementia he might have said anything. She was deeply upset and not ready to let him go.

I know my own mother’s death (in a hospice) was just awful. Not a happy death at all. But as I’ve spoken about this elsewhere on this blog I won’t go into it again.

However, this week something reminded me of an occasion, not so long ago, when I was visiting one of my old folk in hospital. She had been going downhill and as I sat there I recognised that it would not be long before she died. I knew she had no family or anyone to be with her so I asked a nurse what the doctors were saying and was she likely to go soon. Firstly the nurse said she couldn’t discuss the patient with me because I was not ‘family’ but after much persuasion (and I mean much) she did agree that she possibly might die soon. “How soon?” I asked. Because I’d thought I’d like to sit and be with her so that she wasn’t on her own.  It was then that the nurse started telling me about the Liverpool Care Pathway. I told her I did know about it, having been a p/t hospital chaplain. “Well,” she retorted, “we will be taking care of her.”  I mentioned that there was also a ‘spiritual’ part to the LCP and I would like to help in that part. “Oh that’s not about religion!” she said, “Spiritual is all about her having clean clothes and nice things about her.”

I don’t think I had anything to say to that. Somewhere along the way, in a teaching class, or on a busy ward, this nurse had been taught the LCP. In all possibility she was taught by someone with no religion, or even someone who was hostile to it. I’m not saying that having a clean nightie and brushed hair is not part of your spiritual needs but it certainly isn’t all of it. I had been bringing communion to this woman for months and we had talked often about her imminent death.

Perhaps this is partly why the LCP is not working. Perhaps ignorance, hostility, or embarrassment is why some hospital staff just don’t know how to talk about end of life things in a religious context. Or maybe it was just this one nurse. All I do know is that there needs to be more communication, and especially listening.

PS And yes she did die that night on her own. If they’d phoned I would have gone.

PPS I love nurses.

headstone celtic blossom

Death and assisted dying

Death is all around me at the moment. It is in our daily readings in the Offices. It is in the tears of the recently bereaved who read them with me. It is in the watching and waiting as a beloved mother dies. It is in the memories of those who find this time of year difficult because of an anniversary or the first Christmas without them. It is in the oil to anoint a chilled brow. It is in the bleak chill of the cemetary that I can’t reach. Death is all around.

This morning I have been thinking about how to achieve a happy death. We can’t all choose that we will have a happy death. And if we were just to spend some time thinking about how that might be, what would you want? At the end of a good and satisfying life, in peaceful surroundings, with no pain? That is an ideal that not many can achieve. But when it does we can give thanks.

Reading James Woodward’s blog this morning has made me think about my mum’s death. It was not a happy death. It was in a hospice which should have meant that all was done to make it a ‘good death’. That didn’t happen. On her first visit (to get medication sorted) a nurse was impatient with her when she needed the toilet. To mum she seemed brusque and impatient and made her wait for a long time in desperation. She was rude and she shouted at mum. Of course we don’t know what was going on elsewhere in the ward at that time, and why that particular nurse seemed uncaring. Nor would they know that when my mum needed ‘to go’ there was no hanging about. But somehow this episode became a huge issue for mum. It may be that it became the focus for all her fears about dying, but nobody ever took time to listen to her to find out. She couldn’t wait to get home.

She did get home after a few days to stay with my sister. There she was cared for day and night by C with visiting health care workers coming in daily who got to know her well and who listened. She wanted to die there. She was adamant that she didn’t want to go back to that hospice. But then she collapsed and my sister couldn’t get her up off the floor. For that, and other reasons, the decision was made that she should go into the hospice. I was part of that decision and we all felt it was for the best. I went in the ambulance with mum and it was then that she turned her face to the wall. She didn’t want to go and made it clear that she was unhappy. So unhappy, in fact, that she didn’t speak again for a week until she died. We visited daily and tried to chivvy her along but she remained facing the wall (literally, as her bed was against a wall). The doctors said she was suffering from depression and they would give her medication for that but that it would take time to work. Time she didn’t have.

For weeks before she had been asking to die. She begged doctors and health visitors to give her something to speed the process. She wasn’t in pain but she knew that it was only a matter of time and she didn’t want to prolong it, for her sake and ours. She knew that daily visiting and caring was taking its toll on us all. (We didn’t mind, of course, but we knew she did. She never wanted to be a burden.) In the hospice we knew she only had days to live and when she wouldn’t speak to us, we were told that the only thing she said to doctors was that she wanted to die. There was nothing they could do. She has signed a Living Will but in these circumstances it wasn’t much good.

Nearly five years later I can still remember that last week clearly. It was not a happy death. It was a smelly, silent, and prolonged death. The hospice didn’t burden us with the information that her wound was infected and that she probably had MRSA or some other infection. We only knew when the ward was closed after her death and her belongings destroyed.

And we are left with the knowledge that it needn’t have been like that. I believe mum could have had a happy death. She could have had a happy death at home if the correct care was in place to help people care for their relatives there. And this appears to be a postcode lottery as I hear and have seen Macmillan nurses doing all they can to create such an atmosphere, but they are not available everywhere. She could have had a happy death if a nurse had been more sympathetic over something as basic as bringing a commode sooner. She could have had a happy death if a doctor had been willing to give her something which would have allowed her to bring her death forward by a few days.

I’ve heard speakers from the Church resist assisted dying. I don’t understand it. We know and believe they are going to a better place. I visited someone two days ago who was allowed home from hospital to die. It was peaceful, quiet, spiritual, warm and, in the end, a happy death. It is something that I pray for without fail – that we should all have such a happy death.

Last word on mum

Probably the most difficult thing I’ve had to do in my few years of ministry was my mum’s funeral yesterday. But amid the prayers and support of so many friends and family, near and far, we managed to give her a great send off. Fr K stood by me ‘just in case’ and helped with readings and prayers and with only a few pauses for deep breaths, I made it through. Son No 1 read a wonderful poem – I’d pick more daisies – and looked so smart that she would have been proud.

Mum was a great hoarder and we have found copious quantities of letters and cards sent to her by us through the years. I made up a photograph album of her life and took it with us to the bun fight after the funeral. It was a great way to find out who some of the people were in the photographs and share some memories.

One of the nicest things to have come out of this awful time has been that we have become closer to my sister and her family. Just what Mum wanted.

Mum

The latest news on mum is that she is suffering from depression. No surprises there! She is desperate to die but her body is still not ready to give in. Her state of mind is such that she sleeps all day and even when we visit she keeps her eyes closed and faces the wall. The doc has given her anti-depressants but they take 10-14 days to take effect. A touch of irony there then.

She has asked to be taken off all her medication which included 3 different pills for her heart and now she has come off her warfarin. This could mean that she gets a clot. Her kidneys are failing but again this could take some time before it becomes fatal. Her wound is infected but she is not getting antibiotics. It seems incredible that she is still with us.

It is hard to pray “Thy will be done.”

Unexpected gift

Today I arrived in plenty time for a board meeting at the General Synod Office, only to be told that it had been cancelled and someone should have told me. Thought to myself that it wouldn’t be a wasted journey if I picked up some copies of the childrens’ liturgy which I’ve noticed St Mark’s don’t have. They had none.

I found myself out on the pavement thinking to myself that I had been given an unexpected gift. A whole day when I thought I’d be in a meeting and now it was free. My car was safely ensconced in the all day car park and I could do whatever I liked. But could I think of anything I needed to do? Could I think of anything I needed to buy at that end of town? Could I he**.

So I bought some flowers and went to visit mum and was just in time to follow the ambulance taking her in to the hospice. And I was able to do all the information sharing which has to be done when you are admitted and which I know mum hates doing.

Then I did some shopping (boring groceries) and had a wee browse round Borders and then home in the snow. And now I might sit down and read a wee book. An unexpected gift indeed.

Blogging about mum

My apologies if my blog is becoming rather self-indulgent. I began putting news of mum’s health on it to save me phoning round friends and those who were praying for her. And from that point of view, it has saved me a lot of phone calls and I do appreciate your comments and prayers.

But it would seem that we are not at the end yet. Yesterday mum sat up and demanded porridge. She did collapse later and the nurses had to be called to help get her back to bed. The doc has changed some of her pills because her blood pressure was so low (80 something over 40 something) and told her to stay in bed. Her wound appears to be infected too, but tests have been taken. So it seems that she is with us for a wee while longer. Thank God. And thank you for your prayers.

Mum

Not a good weekend and the doctor has been asking questions about where she would like to be when she dies, ie at my sister’s or in the hospice. It would appear that it may be imminent. Mum has decided that she would like to stay at my sister’s and she is okay with that. This is not what we had all planned a month or so ago but things change and that’s fine.

Mum is very, very tired and sleeps most of the time. An upsetting day for us all.

Mum

Well mum got home from the hospice the day before yesterday and apart from being tired and having pretty high blood sugar seemed not too bad. Last night she went down hill rather quickly and her blood sugar was too high for the meter (over 32) so panic stations ensued. Her insulin was doubled and my sister had to pour fluids down her like there was no tomorrow.

Today has been a day of doctors and nurses and insulin and fluid. She is very weak but that may be the diabetes. Doc said that she can go back to the hospice if my sis wants. We’re going to wait and see for a day or so.

It all changes from day to day.

Mum

Mum is still in the Hospice and is now on steroids which have helped her appetite but then she throws it up back in their face! But at least she enjoys it going down – the food in the Hospice is excellent.

Some of her drugs are being given intravenously now to stop her losing their effect. The doc says there is a possibility that the cancer is back blocking her bowel.

Today she has had 2 bouts of angina – as if she hasn’t got enough to contend with. She has got to the stage where she is tired and fed up. At those times she says she wishes she hadn’t made it through the op.

It’s all about quality of life.

And the commode came too

Mum arrived today to stay for a few days to give my sister a rest. She arrived with a car load of stuff, including a chemist-shop’s worth of pills, a list of instructions, and the commode.

This afternoon we visited the Oncologist and it seems that her Pancreas is not funtioning properly so she has been given enzymes to take which may help her absorb food better. She has been sick quite a lot lately and I won’t go into the story of her bowels. Suffice to say that giving her antibiotics which cause diarrhoea might not have been such a good idea, especially in a rectory with a dodgy loo!

Mum can’t walk very far now so we had to get a wheel chair at the Royal Infirmary. You have to pay £1 for these but you get it back when you return it – like a supermarket trolley. The one I found had obviously just been returned by someone who had been out in the pouring rain and it was soaked. We only had one wee hankie between us so it was a damp ride. But my steering has improved since last time and we didn’t hit anyone or anything.

We have set up a bed in the lounge for mum because she can’t get upstairs (and there’s no loo up there). When we got back from the hospital her dog which I am now looking after, had been up on her bed and pee-ed on it. That’s twice in a few days. He is 12 so there is no excuse, except that he must be upset by all the change in routine. Why didn’t he use the commode that was right next to the bed, I ask myself? Or his own bed? Yeh, that’ll be right.