Palliative care concerns from Marie Curie

[Slewis7313]

Saw this on BBC News this morning. They also interviewed a Marie Curie representative and the wife of a Pancreatic Cancer sufferer who's husband died last year. It was a short but interesting piece which fundamentally highlighted the lack of a 'joined up' system of care for the terminally ill. The link below has the detail.

http://bbc.in/1n6Vqhy

Take care all

Steve

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[J_T]

Hi Steve, you beat me to this . I have just read the article KATB emailed me this morning.

I have to say the care we received for Ray was excellent and pain relief was also excellent. We had one distressing incident which unfortunately was in the last few minutes of his life. I told my GP, our Macmillan nurse and the team involved, the district nurses. They encouraged me to make an official complaint which i did and that too, has been handled well.

Such a shame though that first class care was marred right at the end, not least for Ray.

Julia x

[Slewis7313]

I don't know the detail Julia, but am saddened to hear that the system failed you at the most important time. I think this is what they are saying though....all the constituent parts are there, but the processes to pull them all together simply aren't.

Steve

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[Carole McGregor]

Thanks for sharing this Steve. My complaint about Clive's treatment in hospital the weekend before he died is still under consideration by the NHS board concerned. I don't know what it is like elsewhere in the UK but here in Glasgow there are NO palliative care specialists available at weekends. A succession of junior doctors were responsible for Clive, not one of whom had the skills or confidence to deal with his imminent death and my frantic phone calls to local hospice, cancer centre, Macmillan, district nurses etc got only voicemails. I brought him home eventually on the Monday by private ambulance so he had the peaceful death at home he so desperately wanted but the experience has left me scarred and angry. Hospices can only accommodate relatively small numbers. Most people die in acute hospitals where getting the palliative care needed is a lottery. And we call this a civilised society !

[J_T]

That's terrible Carole. I know how scarring it is when things go wrong, particularly right at the end of life.

Much love

Julia x

[Dollysdaughter]

I'm so sorry that you have had to go through this. I naively thought that this was the one time that the medical profession would really shine. I am really scared about what the best thing to do for my mum will be when the time comes. It sounds like patients/family wishes are not carried out anyway?

[Carole McGregor]

I thought same too. Bitter experience has proved that palliative care is really hit and miss. We have birthing plans for new mums, why not death plans for people approaching end of life that medics are obliged to follow where possible ? Big issue for us was that Clive's decline was rapid and unexpected and he was unlucky enough to be in general hospital at time for routine blood transfusion. If I were you, I'd give this some thought now and whatever you think would be best for you and your mum whether this is hospice, home or in some areas, specialist palliative care units in general hospitals, talk to her GP now and get him or her on board. One of the things I hadn't realised was that hospices here do not admit at weekends and getting support at home is really difficult too. I would have carried Clive home myself rather than wait until the Monday if I could have been certain that help would be on hand.

I have to say that Clive's GP and District nurses could not have done more for us in the two days he was at home before he died and I try really hard to keep those gentle memories in mind.

Wishing you strength and love for your mum's final journey.

Cxxx

[Slewis7313]

Hi Carole and thanks for sharing this unbelievable experience which obviously rakes up some not so good memories. Your suggestion to plan ahead and actively arrange for things to be in place before the event makes so much sense, though it should not be this way. That said, if the Hospices do not admit on the weekend the plan will potentially already be unworkable before you start. How we are going to get the different agencies to talk to each other at short notice and work together is going to be a big challenge. It's got to change though!

Take care

Steve

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[MSH]

Thinking back to my working days as a GP, end of life care was one of the most challenging and rewarding aspects of the work, though eventually diluted somewhat when the out of hours service started. There was a big retrogressive step made when the Liverpool Care Pathway (LCP) was scrapped. The papers were full of stories about people dying of thirst but this was because staff weren't following the LCP properly, not because of the pathway. One of the steps involved writing a medication sheet to cover any likely symptoms and leaving the drugs with the patient, in case of need out of hours.

In my area and I suspect in most places it is impossible to access hospice care with little notice. Their role is mainly to advise on symptom control. What I did have access to was a small cottage hospital who were able to provide superb terminal care if home nursing proved too difficult or indeed if the patient wished to have their care there. In this case it was important to have a do not resuscitate (DNR) order signed or the ambulance would be obliged to take the patient to the acute hospital.

When my time comes I want to die in my own bed, but it is reassuring that that we have such good local backup facilities.

[Dollysdaughter]

Carole, thanks so much for thinking of me at such a difficult time for yourself,

Sara x

[J_T]

The thing is even if you have everything in place it can still go wrong.

Ray wanted to be, and was at home all the time. Even if he had a spiked temperature we dealt with it at home because there was nothing to be gained from him being hospitalised, the opposite in fact because hospital is not the place for someone so ill (I believe).

We had had first class care at home from our GP, Macmillan nurse and District Nurses. However, the day before he died we used the DN night service and two very nice, but new to us, DNs came and moved Ray's position slightly, they treated him very gently and that small position change made a difference. They called again about 6am at my request and made sure he was comfortable.

The next day our usual daytime DNs came and did what they do, always with gentleness, and respect. They asked me if I wanted the night staff to call in again. I was reticent because I knew time was short and I really wanted just me and our children to be there at the end but thinking of him being comfortable I said yes. During that day Ray developed an awful sound in his throat (I'm not saying the usual term because I think its awful). It got louder and louder and was really very distressing. My youngest son asked if we should get him on his side but having read stories of patients vomiting up awful stuff I was wary of moving him and knew the DNs were coming so we didn't. (Selfish). I wish so much that we had moved him.

The night DNs came, again two completely new people to us and different from the night before. My children left the room while they dealt with hygiene issues. I then stood at the bottom of the bed. The two nurses decided Ray needed moving up the bed (his feet were overhanging slightly but still on the special mattress). They put a slider sheet beneath him and to my horror they lifted him up the bed with such force that his head rocked and he made noises of protestation. Then one nurse said 'again' and they did it again and he was already up the bed so why?! I am not normally someone who is lost for words but I was so shocked I just ran out of the room and downstairs and actually said to my children that its a wonder he didn't get whiplash! Thank goodness I didn't stay downstairs and I went straight back up, went round the side of the bed and held his hand. The nurse said it looks like he will get a good night. The noise in his throat had stopped, thankfully. After a few moments he coughed twice and made a small silent retch and was gone

These events have really played on my mind. To have him treated so roughly right at the end has been a BIG issue for me. Thankfully my GP, Macmillan and DN manager have supported me and encouraged me to make the complaint.

The nurses involved were experienced and I'm positive they didn't mean to cause distress but they did. As a result of my complaint they are to "ensure our Moving & Handling training includes the special care needed for palliative patients. We will also ensure that these two staff members are asked to refresh their training. I'm sure this will raise awareness of the extra sensitivity and care needed when moving patients nearing the end of their lives." Its all they can do.

It was so awful that this happened literally at the end of his life and as I say, the care to that point was brilliant.

We can't turn back the clock but we can try and ensure it doesn't happen to someone else.

Carole, I hope you get some good responses from your complaint.

[MSH]

Sorry to hear of the problems at the end Julia it makes a difficult time worse. The "awful sound" you mention is an accumulation of saliva with swallowing being impaired and can be helped by atropine.

[Carole McGregor]

I am so glad you made your views known Julia and it's clear from the response you received that this was taken very seriously. I always felt such a huge sense of responsibility to do the right thing for Clive throughout his illness but never more so than in those last few days when he was not able to speak for himself and really, thats when you need the health professionals to take over so that you can just focus on saying goodbye to the person you love most in the world in the certain knowledge that he is not in pain or discomfort and is being treated with care, respect and dignity in the place of his choosing.

I am now waiting for a response to my second submission to the NHS pointing out the inaccuracies, inconsistencies and basic untruths in their first version of events which was clearly drafted by someone sat in an office somewhere trying to cobble together something from incomplete notes and vague recollections of the staff involved. I did consider throwing in the towel - it's just so upsetting to have to re live it over and over again, but my MSP who is corresponding with the NHS on my behalf has said that the truth and accuracy of what actually happened to Clive is clear from my detailed description and wants to raise my concerns in the Scottish Parliament so, with his support, I'll carry on. I just don't want anyone else to have to go through that.

Sorry for the rant. Just wanted to thank you for speaking up. Ray was a lucky man to have you in his corner.

Cxxx

[J_T]

Thank you Mark and Carole and yes, I'm pleased to say that my concerns were indeed taken very seriously.

Carole, your first paragraph is very well put and I agree wholeheartedly.

I'm sorry that you have to keep going over and over the events leading up to Clive being discharged from hospital. I'm sure those events are imprinted in your mind and how frustrating that you have to correct the NHS response.

I'm so glad you have the support of your MSP and it has encouraged to see this through. As you say, its important that we try to prevent these things happening to other people if we can. I must say I felt better when I'd got everything down on paper and the response I got from the relevant body. I hope you will get to this stage in due course.

Keep us informed how you get on.

[Cathy]

Hi Julia and Carole,

I am so thankful that I think (hope) that the last few days and moments of Jonathan's life were made as comfortable for him as possible. This was a time when, as you will know from your own experiences with Ray and Clive, he was so very vulnerable and it's just so important that he got the best care possible. Even so I torture myself at times worrying that maybe more could have been done, even tho I've been assured he was comfortable. I can't imagine how you must both feel, feeling unnecessary upset and stress was caused to your hubbies and to you.

Best of luck going forward Carole. Glad you have got support

Cathy xxx