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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!
OP posts:
BungleandGeorge · 11/08/2023 01:24

At no point do you mention talking to FIL about this, have you? If he has capacity you shouldn’t be doing anything without his permission, the PM is correct there.
it doesn’t quite make sense that the nurse at the care home told you about the medication for the first time but it had been supplied before he even got to the care home, how did they know about it? They aso shouldn’t be discussing it with you if FIL has capacity.
once they’re dispensed to patients most of the controls on controlled drugs cease. They become personal property and unless you’re planning to sell or supply them to someone there’s no issue, you can just return them to a pharmacy

Ihateslugs · 11/08/2023 00:52

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

I would feel the same as you if this had happened with my mother and would want an investigation. Obviously you are a little unsure of some of the facts so hopefully your SIL will get the full picture when she visits.

I would want to know who prescribed the drugs, why they were prescribed and what conversations had taken place with your FIL. If the events took place as you currently believe, then mistakes have been made and protocols need looking at to prevent them happening again.

I would however suggest that your MIL returned them to the pharmacy or doctors surgery straight away rather than hang on to them, it must be upsetting to them and probably causing anxiety - best to have them out of the house.

I have some experience of this having had POA for my mother with Alzheimer’s when she was very frail and close to death. Conversations had already taken place with me, the care home and her GP about no more invasive medical interventions and a DNR was placed on her notes. On her final morning, it was a locum GP who visited her, called by the care home who were concerned about vomiting blood, and although the care home told him about the DNR and he read the notes, he still phoned me to make sure that we had not changed our minds. He discussed prescribing end of care drugs to ease her pain and anxiety, it was a Friday and he wanted them on hand for the district nurses to use if necessary. We were in full agreement and felt reassured by the communication between us, there was no pressure on me to agree or otherwise.

He wrote the prescription and sent it electronically to the local pharmacist for care home staff to collect and gave them an emergency phone number to use to contact the district nurses. As it happened, Mum died just a couple of hours after his visit before the drugs had arrived, they were not needed anyway as her death was very peaceful with her children by her side.

I had every confidence in Mums GP but had we had the same experience as your in laws, I would not have been so happy! I would be seeking answers but I think you need to wait until you have the full picture before taking things further just in case your in laws have got mixed up or have hidden the seriousness of your FILs illness from you.

GreyDuck · 11/08/2023 00:09

Sorry phone posted early. I hope I can help to clarify some things, which might help you make a plan for how to react.
There are definitely some previous posters who have made incorrect statements.
"Just in case" medicine s are exactly that, they are supposed to be prescribed before someone needs them. I don't work in Scotland, but am sure their guidelines will be similar. They are prescribed to people who have a life limiting illness, when the prescriber thinks they might be needed in the next few weeks or months. It sounds like you don't think this applies to your FIL. Age alone would not be a reason.
They are the same drugs used for end of life care, but the whole point is that they are prescribed before the person needs them..
The prescription definitely should have been discussed with your FIL, and usually your MIL would be involved too. It's worrying if neither of them were aware. The just in case services are supposed to prevent worry and distress. Your understandable reaction has shown why clear communication is important.
In terms of the delivery, it's not legal to leave controlled drugs on a doorstep. Your MIL would have had to sign for them.

If you don't want them in the house you can take them back to the pharmacy for destruction. However, before you do this, it really should be discussed with your FIL. It's his health, and they are his property.
If after discussing with your in-laws you still feel it was inappropriate, then I would encourage you to raise this with the GP practice.
I hope this helps to reassure some of your concerns, and to help you clarify how to address the others.

EmilyBrontesGhost · 11/08/2023 00:04

ExcitingTimes2021 · 10/08/2023 23:59

@EmilyBrontesGhost the Liverpool care pathway was completely phased out and replaced with new palliative care guidance almost 10 years ago.

Also JIC core drugs are not routinely prescribed to the elderly. They are not routinely prescribed at all and set criteria must be met prior to being prescribed and dispensed. This may or may not be when patient is end of life. They may be prescribed prior to an end of life pathway being commenced if the patient had a degenerative condition which has a probability of rapid deterioration. So a patient can be quite well at the point of prescription, but the drugs are t prescribed and dispensed, as the name suggests, just in case.

The LIverpool Care Pathway was phased out in name only.

It never went away.

Hence what has happened with the OP.

Startrekkeruniverse · 11/08/2023 00:03

brokenlore · 10/08/2023 23:51

There is absolutely no way the medication would have been left on the doorstep. Sorry OP I get it's upsetting, but I don't think your MIL is being honest. Either a district nurse or specialist nurse will have brought the meds over and explained when and why they would be used, or your MIL will have picked them up from the surgery or possibly pharmacy. So either they were dispensed incorrectly or you are not getting the full picture.
If dispensed incorrectly, that absolutely needs investigating, but your FIL will need to query this, as he's deemed to have capacity. I'm assuming his name on the prescription matches the name on each of the prescribe medications?
You mention you MIL may not be entirely reliable do you mean she's a bit forgetful/ gets a bit confused? Or has she always been someone to spin a yarn?
Either which way, I hope things get cleared up and resolved.

I agree with this - i’m not sure how they would’ve just been left on the doorstep. Maybe mother or father in law have got confused or just don’t want to share the complete picture? When we needed a JIC pack we had to physically collect it from the pharmacy once the GP had written a prescription. They’re usually quite tough to get hold of and they can’t just be administered willy nilly anyway.

SkinnyMalinkyLankyLegs · 11/08/2023 00:01

Auntieobem · 10/08/2023 23:23

Sorry but your first paragraph is nonsense. Guardianship may come into play where someone who hasn't registered a poa becomes incapacitated. But a poa only becomes active once someone loses capacity ( its set up while they still have capacity..)

My mistake, I'm getting confused with welfare and financial POA. It's financial that can be exercised while the person still has capacity (should they agree).

The rest of my post still stands though.

I would also very curious if more hasn't gone on behind the scenes though. An 87 year old "doddery" man, who has been put into respite care. A MIL who more than likely has taken receipt of the drugs but has forgotten and claims they have been left on the doorstep... I'm wondering if FIL is much further on in his illness than he and MIL are understanding. I really don't know. I think a sit down with the GP is in order for FIL and other members of the family.

I hope you get it sorted OP. I see there are people on this post who are getting quite personal with you but I think that they would do well to remember that this will be a very stressful situation for the family and that you are peobably dealing with the situation from a place of fear and anxiety.

ExcitingTimes2021 · 10/08/2023 23:59

@EmilyBrontesGhost the Liverpool care pathway was completely phased out and replaced with new palliative care guidance almost 10 years ago.

Also JIC core drugs are not routinely prescribed to the elderly. They are not routinely prescribed at all and set criteria must be met prior to being prescribed and dispensed. This may or may not be when patient is end of life. They may be prescribed prior to an end of life pathway being commenced if the patient had a degenerative condition which has a probability of rapid deterioration. So a patient can be quite well at the point of prescription, but the drugs are t prescribed and dispensed, as the name suggests, just in case.

brokenlore · 10/08/2023 23:51

There is absolutely no way the medication would have been left on the doorstep. Sorry OP I get it's upsetting, but I don't think your MIL is being honest. Either a district nurse or specialist nurse will have brought the meds over and explained when and why they would be used, or your MIL will have picked them up from the surgery or possibly pharmacy. So either they were dispensed incorrectly or you are not getting the full picture.
If dispensed incorrectly, that absolutely needs investigating, but your FIL will need to query this, as he's deemed to have capacity. I'm assuming his name on the prescription matches the name on each of the prescribe medications?
You mention you MIL may not be entirely reliable do you mean she's a bit forgetful/ gets a bit confused? Or has she always been someone to spin a yarn?
Either which way, I hope things get cleared up and resolved.

GreyDuck · 10/08/2023 23:43

Scattersaurus, I'm sorry you have gone through this, it sounds like a very upsetting experience for you.
I just wanted to clarify a few points though, which l hope will

EmilyBrontesGhost · 10/08/2023 23:40

Scattersaurus · 10/08/2023 23:20

As well as mild Parkinson's he can be incontinent and can be curmudgeonly hence MiL wanting some respite.
Doesn't mean he's end of life though!

This is standard for the elderly.

They are automatically prescribed "end of life" drugs, Midazolam and Morphine.

I'm honestly reluctant to say any more than that, but this is what was happening in Spring 2020 in hospitals and care homes, when relatives were banned and our elderly had no-one to advocate for them.

Try Googling "Liverpool Care Pathway" and that might help you understand what is going on.

Scattersaurus · 10/08/2023 23:39

Those are my thoughts @Darkbutstarrynight thank you.

We will continue to try to get more information from the practice in the next few days, and depending where we are SiL will be on the case as soon as she gets up there in a couple of weeks.

OP posts:
Merapi · 10/08/2023 23:39

Scattersaurus · 10/08/2023 23:11

No. They were prescribed and delivered before he went to the care home. DH did have a conversation with a GP on Monday who confirmed that there was no DNR - his regular GP is on holiday until next week so this one just confirmed that there was no DNR and couldn't explain the prescription. He was happy to talk to DH at that point but the practice has locked down since our email of concerns landed.

If they were happy to discuss it to start with, but are now refusing to talk to you, it seems to me that they have realised there has been a major cock-up and they are covering their backs.

Darkbutstarrynight · 10/08/2023 23:35

That is a serious error one way or another. Personally I would be contacting the practice for more information and then explaining you will be putting in a formal complaint to the CQC or the equivalent group that monitors GP practices in Scotland. Those drugs do not sound at appropriate for your dad, they are not in a correct format as would need an District Nurse to administer, they are controlled drugs that have been left on a doorstep that anyone could have stolen.....along with his information eg. Name, address, dob and NHS number on the label so it's also an IG breach. And all that's assuming they were incorrectly issued to him by a Dr who needs a serious discussion as imagine that should be a "never event"....if issued to someone else and given to your dad, that's almost even worse as he could have taken some in some way by mistake so the drugs may have caused direct harm, and the person that needed them, is now in their final hours/days, without the meds they need. They won't be able to get any more easily as on paper they will have already had them issued. Someone needs to go in with him ASAP, or be on a joint phone call where he gives that person permission to speak to the Dr or Practice Manager....this is not just a case of no harm.not and just drop them back.....

Scattersaurus · 10/08/2023 23:34

There has been no harm done in having medication “wrongly prescribed” as he cannot administer them to himself in the form they are in, so really there is nothing to make such an almighty fuss over.

If you can't see any harm in drugs being wrongly prescribed then I think you probably shouldn't bother posting on threads relating to healthcare @TappingTed

Hopefully you don't work in healthcare or air traffic control or anywhere else where accuracy and safety are required.

OP posts:
TappingTed · 10/08/2023 23:29

@SkinnyMalinkyLankyLegs as the other poster says. That’s nonsense. POA for health only comes into play when you lack capacity. If you don’t have POA and lose capacity, then guardianship is needed.

@Scattersaurus mild Parkinson’s doesn’t cause enough impact to require respite care and he is 87 years old. You’re not being told the full story here. And quite frankly I am done being involved in this family drama as it seems like much ado about nothing.

There has been no harm done in having medication “wrongly prescribed” as he cannot administer them to himself in the form they are in, so really there is nothing to make such an almighty fuss over. But it would appear your husbands family like a bit of drama.

QueenCamilla · 10/08/2023 23:28

I wish I could have some "just in case" .
Could have done with a dose of morphine last summer instead of waiting for an ambulance that never came. I was stuck in my home (and in the bath at one point) unable to get myself to the hospital due to pain. I'm 36.

I know that my ex has hoarded Tramadol after his surgery. Just in case something awful happens and it's not just some shitty Paracetamol to hand.

Personally, I'd be comforted by "just in case" relief medications available of any kind, so I can't relate to the frustrations&upset in this thread.

Anothenamechange · 10/08/2023 23:26

TappingTed · 10/08/2023 22:45

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???

I've seen you being unnecessarily nasty and belligerent on other threads today. Why? You This OP is upset by her situation, as I would be. Very powerful drugs have appeared from nowhere and she has no idea who dispensed them or whether the dispenser may have power to make decisions on her FiL medical care without their knowledge. It's really unkind to tell her she's making a fuss about nothing.

Auntieobem · 10/08/2023 23:23

SkinnyMalinkyLankyLegs · 10/08/2023 23:13

The practice manager is wrong. POA is for people who do have capacity, for the person who holds the POA to deal with matters on their behalf. When they don't have capacity anymore, it's guardianship you would get, as opposed to POA. This is for Scotland.

Get SIL to call up the GP surgery, when your father is there and clarify if he has or hasn't been deemed as under end of life care. Find out why the drugs were prescribed. They may not be able to tell you this over the phone, you may need an appointment. Then, once you know that FIL isn't end of life, ask them what they want you to do with the drugs. They may very well say return them to a pharmacy. Then someone can simply drop them off to a local pharmacy for them to deal with.

Sorry but your first paragraph is nonsense. Guardianship may come into play where someone who hasn't registered a poa becomes incapacitated. But a poa only becomes active once someone loses capacity ( its set up while they still have capacity..)

Scattersaurus · 10/08/2023 23:20

As well as mild Parkinson's he can be incontinent and can be curmudgeonly hence MiL wanting some respite.
Doesn't mean he's end of life though!

OP posts:
saraclara · 10/08/2023 23:19

SkinnyMalinkyLankyLegs · 10/08/2023 23:13

The practice manager is wrong. POA is for people who do have capacity, for the person who holds the POA to deal with matters on their behalf. When they don't have capacity anymore, it's guardianship you would get, as opposed to POA. This is for Scotland.

Get SIL to call up the GP surgery, when your father is there and clarify if he has or hasn't been deemed as under end of life care. Find out why the drugs were prescribed. They may not be able to tell you this over the phone, you may need an appointment. Then, once you know that FIL isn't end of life, ask them what they want you to do with the drugs. They may very well say return them to a pharmacy. Then someone can simply drop them off to a local pharmacy for them to deal with.

I have both POAs for my mother. I can use the financial one, but not the health one as she still has capacity.

Scattersaurus · 10/08/2023 23:18

Thank you @SkinnyMalinkyLankyLegs that makes sense.

SiL will definitely be on the war path when she gets up there in a couple of weeks. There's no way FiL is secretly declining without her knowing about it so it is definitely a mistake.

OP posts:
Spacecowboys · 10/08/2023 23:17

Mild Parkinson’s disease is highly unlikely to require respite in a care home, people in the mild stages are still independent. Is mil actually coping, has she down played fil’s stage of illness? When did you last see fil yourselves, are you absolutely sure the information you are being given is correct? If it has all been an error, your fil can arrange for the medication to be collected.

SkinnyMalinkyLankyLegs · 10/08/2023 23:16

^assuming the POA is for health...

Scattersaurus · 10/08/2023 23:14

@TappingTed
Personally I like my GP and other HCPs to be professional and not make casual errors with prescribing and the. Say "oh well, you didn't take them so no harm done".

So yes, I am concerned about end of life drugs being prescribed for someone who isn't end of life and I don't think it's being a drama Queen to make a fuss about it.

OP posts: