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Elderly parents

"Just in case" drugs for terminal patients prescribed for F-I-L who IS NOT terminal!

95 replies

Scattersaurus · 10/08/2023 22:17

My F-I-L is 87, does have Parkinson's, fairly well controlled but getting doddery, but is definitely not close to death. He potters about. Does not have cancer, or any other terminal type illness.
He went into a home for a week last week, to give M-I-L respite. When DH rang the home to see how he was the nurse casually mentioned had end of life prescriptions.
WHAAATT? He is NOT end of life!!!

On further investigation we cannot find any record of a DNR/ReSPECT (Recommended Summary plan for emergency care and treatment) form having been completed or those discussions around end of life having happened.

However it seems he has had so called "Just in Case" drugs prescribed and delivered to their home (actual home, not the nursing home). M-I-L claimed they had been left on the doorstep (which may or may not be true as she's not entirely reliable).

The "just in case" drugs are a selection of powerful opiates and sedatives. Morphine, Midazolam, Haloperidol and one or two others for symptom relief.

I am beyond shocked that these have been prescribed, dispensed and delivered, without, as far as we can tell, any recent GP visits or assessment of FiL or evidence of him being close to death. He isn't close to death.
I've looked at various guidelines which talk about discussions including the patient (if they still have capacity) and the family. The prescription is for a patient who is "deteriorating and expected to die imminently". He is a long way for imminent death!

They are in Scotland and we are down south so it is not easy to be on the case, my SiL is going up in a couple of weeks.

DH sent a letter to the practice stating he and SiL had power of attorney and wanted to know when he was last seen by a GP, who prescribed the drugs and why, and what end of life discussions had been had. Also demanding that the drugs are collected by an appropriate person and removed from the house in the next 24 hours.

The practice manager has come back and said the POA is for when a person does not have capacity and FiL does so they won't deal with us about it. (Which kind of proves my point that FiL should have been included in any discussions about end of life needs/drug prescriptions etc, which hasn't happened).

Poor chap now thinks someone wants to bump him off and is very upset about it all.

Aside of concerns re FiL I am appalled that large quantities of controlled drugs are casually dispensed "just in case". Scotland has a massive drug abuse problem and having these drugs kicking about in the community is surely not a good idea. Plus there must be massive wastage as I imagine most dying people will pop off long before they have got through the stocks in the box.

I feel half tempted to spend the weekend just driving up to Scotland and back to remove the drugs myself but then I'd probably get prosecuted for appropriating controlled drugs.

How can we get them removed from the house if the practice won't help?

They did suggest MiL dropping them off at the chemist but that's not good enough. 1. She shouldn't have to do that and 2. That lets them off the hook. I want them to understand the massive balls up they have made and take it seriously.

Having sent a strongly worded but polite and reasonable email to the practice manager, as they are not being helpful we are escalating a full complaint but meanwhile these drugs are sitting there. We want them out of the house.

Has anyone else had an experience like this?

"Just in case" drugs for terminal patients prescribed for F-I-L who IS NOT terminal!
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GrannyAchingsShepherdsHut · 10/08/2023 22:22

That's absolutely mental! Also, they're all injections. If they've not discussed it with anyone at all - who exactly will be administering injections?! They've obviously not told FIL how to do it!

Scattersaurus · 10/08/2023 22:23

Here are some Scottish Palliative Care Guidelines that explain more about anticipatory prescribing for patients in the last weeks or days of life.

www.palliativecareguidelines.scot.nhs.uk/guidelines/pain/anticipatory-prescribing.aspx

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Scattersaurus · 10/08/2023 22:26

Well I suppose a community nurse would be expected to administer the drugs, but they need a prescription. And one might have expected that they would already be involved in the care of the dying patient.
Which obviously they haven't been with FiL as he's not dying!

I'm so shocked by it, I really am.

"The prescriber must complete a community medication administration chart before nurses in the community can administer medicines. This should include the dose, route, frequency, indication(s), limits, and when to seek advice."

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saraclara · 10/08/2023 22:27

Has someone else who was having respite at the same time, been sent home without the drugs they ned?

EmmaEmerald · 10/08/2023 22:28

This might sound but have they got him mixed up with a different patient?

it's quite hard work to get those meds for someone considered to be near death, IME.

EmmaEmerald · 10/08/2023 22:28

*sound mad, that should say

Scattersaurus · 10/08/2023 22:29

We did wonder if they had mixed up patients.
FiL's name is not a common one. I have the same name and am the only person on my professional register with that name so I doubt the name could have been mixed up.

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LunaTheCat · 10/08/2023 22:30

Oh my goodness!
That is terrible.
In NZ we would never prescribe End of Life Care Drugs for someone who is not known to need palliative.
? Left on doorstep . I actually think you should contact the Police in Scotland.

Ethelswith · 10/08/2023 22:31

OK, I'm no expert in these, but that suite of drugs looks very much to me like a "chemical cosh" - haloperidol is an antipsychotic FFS. The care home where an elderly relative was living tried to get this for her, we think to make her "easier" to manage. But we stepped in (no quibbling about person with POA, as they'd been dealing with them for some time already) and asked to see evidence of why they thought an antipsychotic was needed when there was no sign of psychosis, and then asked for precise justification for all the others.

They decided that the prescriptions perhaps weren't needed after all.....

I really don't know what's the best course of action for you. But given the nature of the drugs and the comment from that care home, I'd definitely be looking for a different place for respite care.

Scattersaurus · 10/08/2023 22:32

I have wondered about that to @LunaTheCat

It seems somewhat over the top and I wouldn't want the in laws to be upset by a sudden massive overreaction of a squad of police bursting in to remove drugs. I have so little faith in the police I don't feel I can trust them to behave appropriately. But at the same time, if the practice won't arrange for removal of the drugs then asking the police to do it is something I have been seriously considering.

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Yesabsolutely · 10/08/2023 22:34

I think that GP has prescribed to the wrong patient. I work in a care home and JICS are prescribed with either the patient or relative consent.

TappingTed · 10/08/2023 22:34

I think it sounds like some kind of error or there is something going on that FIL hasn’t told anyone about? You say he is “doddery” but then that he also has capacity… so which is it?
Im not sure that Scotlands drugs issue is either here nor there in relation to JIC medication- people aren’t generally having drugs dropped off at their doors and you even say your MIL might be chatting shit about that…

So tbh if they have capacity then they can deal with this themselves. MIL
can return the drugs to any pharmacy. They won’t implode on touching them! I don’t know why you’re making such a song and dance about it all.

FWIW though I would be having discussions about DNACPR etc as POA it’s good to have knowledge of what a persons wishes would be in the event of a cardiac event. And if he has PD, his longer term prognosis might not be great and a cardiac event could be a blessing in disguise.

LadyGardenersQuestionTime · 10/08/2023 22:34

This sounds like a massive error rather than anything sinister. Is there any hint on the packaging of which pharmacy these have come from? Could you start by phoning them in the morning?

Scattersaurus · 10/08/2023 22:35

The care home isn't at fault @Ethelswith - the drugs weren't at the care home. The manager there was very helpful and that is how we found out about it as she looked all through FiL's records and said he'd been prescribed end of life drugs. The drugs were delivered to the in law's home address.

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Ohmylovejune · 10/08/2023 22:36

My Mum was given JIC box before moving onto palliative. She was under Oncology and making a decision whether to have palliative chemo or not. However she went downhill very fast and fell and following a doctors visit she was given the box. Thank goodness she was. 4 days later it was the weekend and we needed it. We also didn't have any contact numbers but with some shouting managed to get one and the nurse came and administered what was necessary. She sadly died quite quickly on the Sunday. Honestly getting these at a weekend would have been horrifically difficult and she would have been in far more pain than necessary or have had to be hospitalised - which she didn't want.

Scattersaurus · 10/08/2023 22:38

He's doddery on his feet @TappingTed
That doesn't mean he doesn't understand what is going on. In fact the care home reported that he managed to walk from his room to the dining room along the corridor very well. He's only had Parkinson's for four years and is relatively mild so far.

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Soberfutures · 10/08/2023 22:39

Who has actually prescribed them? His GP? Or a hospital? It really sounds like an error? The pharmacy can only dispense what is sent to them written on a prescription so it won't be the pharmacy fault. So it needs tracing back to the prescriber.

Clefable · 10/08/2023 22:39

It seems very odd that these drugs would suddenly appear totally unsolicited or without any recent interaction with medical staff! Surely they don't just randomly decide to send people packages of end of life drugs unless they are coming into contact with them to review their care, etc.? Are you sure no one has been in contact with GP or had any discussions? Is it possible there's been a misunderstanding? Does FIL really have capacity if he's doddery, and could he have had a discussion with GPs that has led to this, perhaps mistakenly, and they believe he has capacity when perhaps this shows he doesn't?

It's a very tricky situation, as if they are convinced he has capacity then they are unlikely to disclose any information about his medical treatment.

Ethelswith · 10/08/2023 22:40

So the care home knew about the prescribing? I wonder if it was his regular GP or one who attends to the care home residents?

Because if your DMum isn't sure how they came in to the house, could they have come back with him from respite? Rather than being delivered?
Maybe he agreed to whatever was suggested to him there - and if he's considered to have capacity, there isn't much you can do about it. Unless he authorises GP to speak to you about him - which might be useful to arrange anyhow

Scattersaurus · 10/08/2023 22:42

Also I agree that DNR/ReSPECT forms are good to get sorted and have those conversations. That is one of the reasons for us "making a song and dance" about it. He has been prescribed drugs for end of life but hasn't had the conversations and hasn't been assessed as being in need of them.
I don't want them in the house and want them appropriately removed because they shouldn't have been prescribed for iph I'm in the first place. And if the prescribing is an error then there is a risk of them being administered in error as well.

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Clefable · 10/08/2023 22:44

Maybe the best option is for SIL to accompany him to the doctors when she is up and see if they can get to the bottom of what's happened?

TappingTed · 10/08/2023 22:45

Scattersaurus · 10/08/2023 22:35

The care home isn't at fault @Ethelswith - the drugs weren't at the care home. The manager there was very helpful and that is how we found out about it as she looked all through FiL's records and said he'd been prescribed end of life drugs. The drugs were delivered to the in law's home address.

Then she should be able to see who prescribed them- and actually is she the manager or a nurse in charge of the nursing home?
Either way I think you’re all making a huge fuss and drama about something that really doesn’t need this fuss. The drugs are NOT going to do anyone any harm if your MIL puts them in a bag and returns them to the pharmacy. They will have a label on them stating where they are from. Or call the pharmacy and say you believe they have been prescribed in error and can they collect them?
And then if your FIL wants to take this further he can ask his GP who prescribed these drugs and why… but it’s frankly not your business and not worth all this hand wringing and frankly baffling why you’d even dream of calling the police!!!! What crime has been committed???

Scattersaurus · 10/08/2023 22:45

They were prescribed by the GP practice the week BEFORE he went into the care home. MiL deals with most of communicating with the GP and managing his Parkinson's meds etc but whatever impression she may have given the GP surely they should have visited and assessed him in person?

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TappingTed · 10/08/2023 22:46

Scattersaurus · 10/08/2023 22:42

Also I agree that DNR/ReSPECT forms are good to get sorted and have those conversations. That is one of the reasons for us "making a song and dance" about it. He has been prescribed drugs for end of life but hasn't had the conversations and hasn't been assessed as being in need of them.
I don't want them in the house and want them appropriately removed because they shouldn't have been prescribed for iph I'm in the first place. And if the prescribing is an error then there is a risk of them being administered in error as well.

🤣🤣🤣
so you now think someone is going to Rock up and jab your FIL with some drugs without his consent??? Wtf???

There is reaching and then there is this…

Scattersaurus · 10/08/2023 22:47

I don't think it is a huge fuss and drama to be concerned that end of life drugs have been prescribed and dispensed to someone who isn't end of life!! @TappingTed

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