End of life: I have severe copd and... - British Lung Foun...

British Lung Foundation

49,136 members58,753 posts

End of life

unified profile image

I have severe copd and heart failure and know I have not got long left.But was a bit shocked when collecting my prescription to be given more prescriptions in my name but to be given to district nurse when she calls next week. On investigation there was buscopan and morphine for use with a driver at end of life. It has really upset me as no mention had been made of it

58 Replies

So sorry to see your post unified but like you I’m really shocked to see how you found out about the other prescriptions. Surely you should have been consulted? I would take the matter up with your Doctor and the district nurse, explaining clearly how you were made to feel.

Sending gentle hugs to you. Xx🤗

Catgirl1976 profile image
Catgirl1976 in reply to sassy59

The communication leaves a lot to be desired doesn't it in healthcare!

This morning I was due to have had a video interview for a health service job at 9.15.

With video interviews they send you an invite via e mail to log on for the agreed time and I had waited and waited but no invite so yesterday I had said to my friends I hadn't received an invite off them and they said ring them up and remind them so that I did rather than waiting around!

Turns out the interviews for today are cancelled I was told when I rang up which is why I hadn't received the invite but they hadn't got in contact with anyone to apologise and explain that the post had gone as I do understand plans change and things happen but a phone call or a message to those involved to apologise and explain is just common courtesy!

I'm glad I rang though so I have made other arrangements for today but yesterday I was really cross though but I feel I have dodged a bullet!

Unified I am so sorry to hear this. It is totally unacceptable for you not to be consulted about any medical plans regarding your condition. Very upsetting. Please contact your surgery manager to explain how distressing the surgery’s thoughtless actions have made you feel.

Please let us know what happens and know we are all here for you.

Love and virtual hugs

Cx

How insensitive that was and how unprofessional. Did they think you couldn’t read or wouldn’t understand? I am regularly horrified by how sick people are treated. Please tell them how it made you feel.

Poor, poor you. It must have been a shock for you. 🤗🤗

Damon1864 profile image
Damon1864Volunteer

Hi Unified it must have been such a shock for you, it's disgusting w hi at they have done to you, get in touch with them and ask for some answers don't they realize you have feelings. Please let us know how you get on we are all here for you. Have a good night and take care,sending virtual hugs and love 💕😊 Bernadette and Jack 🐕 xxxxxx

No wonder you are upset unified. If you have seen your doctor recently this should have been discussed with you. Try and contact your doctor or at the very least talk about this with the district nurse next week. Has she been visiting you for a while? Sending you a hug xx

I wrote a whole reply to you about how outraged I was on your behalf. But in the end my rant won’t help you so I deleted it and just thought I’d send you some sheepy hugs and lots of good wishes 🐑🐑🐑🐑🐑🐑

So sorry you have had this experience unified, I hope the doctor and nurse will take extra care and consideration in future when you communicate how this has upset you.

Go get some treats out of the fridge or cupboard and indulge and pamper yourself.

Luv n Hugs BK xox

🌺💖🍎🍇🍷🍭🌼💕🍰🍫🍹

So sorry you have been treated like that , sending you kind thoughts 😥🤗🤗🤗

My advice unified is to forget that you ever saw those items, someone was ham-fisted and unthinking but letting it upset you so is counter productive. You have enough on your plate without trying to educate some blithering idiot. Concentrate on the fact that no one knows how long you have left, the fact is you are still here and hopefully enjoying it, don't let anyone spoil it.For myself I'm expecting to go soon, simply from old age and various ailments. I'm not afraid of death but I'm worried about the dying part if I let myself think about it. Knowing that someone was standing by with the means to ease my passing would be a great comfort to me.

Maricopa profile image
Maricopa in reply to Don-1931

Very well stated. My Mom was recently sent by ambulance to our little town hospital. She’d contracted RSV. Which is described as a children’s disease however with more research one finds it to be deadly in many adults. Mom went in and the next morning I looked at my new Apple iPhone 12 to see several missed calls. Well I’m certainly glad my phone didn’t ring due to some setting error. Because when I called the hospital they informed me Mom had been intubated and transferred to a better hospital in Spokane WA. What got me is how rough and rude the Dr at our small hospital was to me. She point blank stated “we won’t be doing all those heroics again “. I was told by 3 Drs Mom would die. Well this was quite recent. Mom recovered completely and is alive and happy. Had I answered the calls those Drs would have talked me into a DNR.

garshe profile image
garshe in reply to Maricopa

That is horrendous so pleased you didnt answer those calls and your Mum survived her ordeal. Just proves it's never over until the fat lady sings as they say. Never worked out that saying, lol. Great to hear a happy ending gives everyone hope, xxSheila 👍🥰💕

Ergendl profile image
Ergendl in reply to garshe

The saying relates to very long Wagnerian operas, garshe.

garshe profile image
garshe in reply to Ergendl

Well I've learned something today, thanks xxSheila 🙌👍💕

Alberta56 profile image
Alberta56 in reply to Maricopa

Thank heavens for Apple's too clever technology. I'm glad your mum (and you) survived that horrendous experience.

Jason098765 profile image
Jason098765 in reply to Don-1931

Wise words Don

Fircone profile image
Fircone in reply to Don-1931

Well said Don, you are so wise.

sassy59 profile image
sassy59 in reply to Don-1931

Great reply dear Don. So thoughtful xxx

Kimlu profile image
Kimlu in reply to Don-1931

Dear Don - I'm the same, not afraid of death itself. I try not to think about it. Thankyou for your wise words. Love to you and Puss xxx

Oh dear no wonder you are upset, anyone would be too. We had a member here who was given 3 years at most and she lasted 11. You are still alive and kicking and no medic can tell you exactly how long you have left.

Sending you lots of hugs xxx

garshe profile image
garshe in reply to hypercat54

Love these replies theres always hope .xxSheila 🙏🥰💕

ninelives profile image
ninelives in reply to hypercat54

Absolutely agree .No one knows when it's our time to go.

Am so so sorry that you have been treated in such a manner.

Am wrapping you in gentle hugs and please remember the dodgy lung buddies are here for you.

When they say how long you have got it's only a guess not a guarantee!

It's time our doctors and other health care providers started treating us as individuals again. They should discuss with us our treatments and choices. I am sending my best wishes to you and I've mentioned before, but will say again, my mum was told by a consultant she'd be lucky to see retirement (60 back then). Well, despite several chronic illnesses she's still here, with copd too, at 85. She had hip replacement at 81. Doctors are not God or psychic fortune tellers. They sometimes bluntly plan ahead with a one size fits all approach. They often times get it wrong. Sending good wishes to you and don't let any doctors bull in a china shop approach to care upset you. Complain and maybe they won't repeat this with some other patient.

Catgirl1976 profile image
Catgirl1976 in reply to Lemon7

A few years ago I was with a useless surgery and had gone to collect my monthly prescription and the doctors had refused to give it until I had a blood test and I hadnt had anything explained to me of why it was needed and I had refused the blood test and the pharmacist had rung the surgery and demanded they give me the medication and they did back down when the pharmacist had spoken to them so I got the prescription off them and changed surgeries as that wasn't on!

If they had said in a polite manner about booking a blood test I wouldn't have been cross but my current surgery is great and can't do enough for me!

Lemon7 profile image
Lemon7 in reply to Catgirl1976

Yes, it is often the case that a practice may be badly organised or run roughshod, with little or no consultation. When you find a good doctor it's a godsend.

So very sorry, what a shock.

My experience an anticipatory care plan where patients wishes were documented and followed to the letter.

A just in case box left at home with all medications in injection …. should Nurses feel this is necessary to support you in your care. (Discussed within the plan)

Sorry this information was not shared, speak to your Dr/Nurse

Enjoy life for the moment, no one knows how long.

Best wishes.

Oh my goodness how awful, I really feel for you. How totally typical of an empathy free GP Practice. I think I’d register my very clear thoughts on how they’ve made you feel and then leave it behind and move on.

Sending positive thoughts and lots of love

Lynne xx

That is awful and so discouraging, you should be offered more help and support. I am in a similar position but have had a totally different experience. As well as my excellent GP I have been referred to our local hospice and it has made such a difference as there is always someone on call, and I have an appointment with the palliative care consultant in a couple of weeks. Perhaps you could ask about your local hospice. I am thinking of you with love as you go through this journey xx Many blessings.

Not a very nice way to be treated unified. I found when mum was diagnosed with cancer the prescriptions were delivered with no discussion until the doctor arrived, she then went through everything with me and promptly left. I asked mum when giving her the meds did she want them and what they were, perhaps things would have been different if I wouldnt have been around. The medical profession sometimes forget we are people and need to be treated with respect even if we are at the end of life. Please dont dwell on this, it will just add to your anxiety. My thoughts and prayers are with you x

My you carry on for many a day!

Sorry to hear this. Very upsetting but take heed of the wise words of our Don xx

So sorry unified on how you’ve been treated. They should have explained about it all.((((((((((((((((((Huge virtual hugs)))))))))

Oh goodness that just awful for you unified. I hope you'll read all your caring replies again today, especially the one from Don.

Thinking about you and hoping that you'll get to speak to someone as soon as possible. Perhaps you could call the BLF help line after 9am tomorrow, they have a counsellor. It would be good to speak to someone who understands from both sides. Very best to you, Peege

It can take a little while to get over a shock like that and more care should have been taken in preparing you for what to expect. Let the dust settle and put it to the back of your mind for now. Something that helps me is to write it all down and then, as they say, park it! Pick it up again when you see your nurse or when you make a phone call to the surgery.

Be kind to yourself until then and do what you enjoy most. As others have said, no one knows how long they've got so don't waste time now on something you can't change until you can get hold of the right person. My doctor once said to me, 'I have lost two good friends this year. One knew the end was coming but the other was sudden and unexpected. Everyone should make the most of life while they are able. ' He was right of course.

What will make you feel good today? A walk? A phone call to a friend or family member? Looking at something daft on tele? Downing a great big bar of chocolate in one sitting? (That would be me. Lol!)

Whatever it is, I urge you to do it today and let next week take its course. I hope you feel comforted be all the posts on here and can go on to have a happy 'rest of the weekend'.

Hugs from me (((((( ))))))

xx Moy

That is disgraceful. However upset you are (and you have every reason to be) I would urge you to complain to your GP and the area Clinical Commission Group, the Pharmacy and perhaps most important your local MP. Not so much for you but to try to prevent such a terrible thing happening to someone else.

I am so angry on your behalf, I would speak to your GP you deserve better than this, perhaps they are just trying to make you more comfortable when the end does eventually come, but you need to be consulted about treatment not find out like this, I know, I have heart failure & severe lung disease but I have it in my notes that I have to be informed, big hugs from me xxxx

This Is Not Good With The Drs Not Even Telling You.. You Don’t Know How Long U Have Bless U So Live Life From One Day To The Other As Best You Can Live For Now U Take Care Keep Safe You Have Friends Here 🖤🖤

Sorry you've had all this, sending hugs. We're all here for you xxx

I’d definitely be having words with your gp, thinking if you xx

its just mixed communication doctors nurses yourself nothing to upset about

I am shocked about the prescription. My Husband had C. O. P. D for quite a few years. On. 1% 24/7 oxygen, heart disease and diabetes. It was 3years ago i was told he was very very ill. Forward to Sept. 20. Woke up calling out stayed in bed. No pain, said he felt strange and by time paramedics came he had put his head on my shoulder and slipped away. Very peaceful with no morphine or painkillers.

I’m shocked at the way you learned about this medication. I have what is called ‘Anticipatory’ or ‘just in case’ medication and the two that you mention are included in them. Before I was given this medication the specialist nurse from the hospice discussed it with me and explained what it was for. I was told it’s not just for the very end of life, but also to help if your symptoms get worse and your normal medication isn’t helping. They ask you to keep it at home and the district nurse will check it and you put it away somewhere safe until it’s needed. I put mine in a box and keep it high up in a cupboard and forget about it.

Even though I knew the pharmacy would be delivering it, I still felt upset when it actually arrived so I can imagine how you felt. Please discuss it with the district nurse when she comes, tell her how upset you have been. She will be able to talk to you, reassure you that it’s there to support you and help you come to terms with having the medication at home. The district nurse will be a big part of your care so don’t hesitate to talk to them.

Sending you lots of love and warm hugs 🤗🤗😘💕xxx

I suggested in a group im in that everyone checked there medical records, i saw mine just quite by chance and i saw one of the GP's had put a DNR on my records without my knowledge or not ever having talked to me about it, i had it removed, but if i hadn't seen it i dread to think what could have happened if anything i had to go into hospital

Maricopa profile image
Maricopa in reply to cookiechic

That actually occurs more often then one may think!

Sorry to hear how upset you are my husband is end stage COPD and has a chest infection at present he has been getting morphine for just over 2 years now and everyday is a blessing with him all I can say is we were told 2years ago to expect the worst but through covid he he never got it thank God but this new chest infection is really worrying for us and the family all I can say is prayer has kept him going and I hope it will bring you peace no one knows what 2mrw will bring so I am praying for you Jim my husband has been resuscitated 4 times and each time we thought we'd lost him but he's still here taking morphine steroids and antibiotics so there's always hope remember that also a lot of prayer being sent up for you hope you get through this Jim has had 2years now of palliative care and still here don't know if this message helps you xxx

Just sending you so much love. No understanding that I can pass on but a little message from tv series 'Handmaid's Tale'. We are 'Under His Eye'. He will decide our coming in and our going out. Go easy on that morphine. xxx

Definitely speak to your Doctor. The end of life is a time when patients need their physician the most…to explain everything that is happening. Unfortunately they are human as well, can feel like failures at such times, and too often delegate the responsibility to others.

Absolutely terrible practice. I think what as happened here is that the Doctor/ nurse have tried to anticipate future needs and the morphine pump could be one of them. This should have been discussed with you before any prescription was issued. Just because a prescription is issued does not mean that you will immediately start the treatment. This is a decision for you not the people caring for you. If you feel you are not at that stage yet simply refuse and say no. Personally I would be angry if this had happened to me.

That must have been so horrible for you. Speak to your practice manager, for as well as an apology is due to you from your GP, it may stop it happening to someone else. Jax🐶

How appaling, so uncaring too. Maybe the nurse was going to explain when she came to use the drugs. Or maybe someone thought you knew about it. Its totally contra to patients informed consent within the NHS. I feel for you, its such a poor way to find out you must be so upset I know I would be . Do try to make your days as fulfilling as can be , pamper yourself if possible and please if you feel able tell the nurse how upsetting this experience was for you. xx

What medication were did you get

Unified, I am so sorry that you have been treated so badly.♥

Dear Unified,I feel for you that experienced people have let you down so badly. I would have to put in a complaint to the practice manager or doctor and also to the district nurse. Just to prevent this happening again to somebody else. Then put the drugs away in a cupboard, put them in a box in your mind and spoil yourself having or doing something you love. You've had a nasty experience, I've had one or two myself, best to put it behind you now and relax. We're all here for you and wish you well.

Take care, many best wishes to you.

Joan x

Sorry unified that you have experienced this, it must have been so upsetting. When you feel able, do mention it to your doctor and nurse and tell them how it affected you. Sending you a big soft hug.

Debs

Thinking of you unified, hope today is a good day for you.Best wishes BK

You may also like...