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

[Scattersaurus]

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?

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!

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..)

https://mypowerofattorney.org.uk/

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.

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.

@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.

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.

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.....

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.

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.

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, 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

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.

@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.

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.

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.

The LIverpool Care Pathway was phased out in name only.

It never went away.

Hence what has happened with the OP.

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.

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.

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

@GreyDuck which law is that then?

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?

She's someone who likes to talk! Phone up and you can count on being stuck on the phone for an hour. And everyone gets a different version.

So I do have doubts about them being left on the doorstep though I think they probably have one of those drug delivery systems set up with the local pharmacy, perhaps they get a bit slack with their procedures.

TBH I'm not overly emotionally invested - he's not my father after all. But he is, obviously the father of DH and SiL who are upset about it.
Their mother died about 25 years ago and FiL remarried within a year which was a bit of a shock at the time. I don't actually know how old MiL is but she's a good ten years younger than him, giggled like a schoolgirl when they first got together. 
And she has been a lovely Nan to our daughters and taken very good care of him over the years.
But I do think she's probably a bit at the end of her tether with caring for him, he's never been an easy man, she is younger and fitter and likes to go for drives to meet friends for lunch and shopping and that sort of thing so life has closed in on her over the last couple of years.

DH and SiL think she has probably exaggerated FiLs state of health to maximise respite care and perhaps this triggered the prescription. I'm inclined to think this likely.
But now FiL is upset and thinks she wants to dump him in a home when he's not ready for that yet and DH thinks she is plotting to bump him off!

My focus is that I just don't believe a GP should be prescribing end of life drugs without first assessing the patient and then having those discussions with the patient and family in the way @Ihateslugs described.
Whatever MiL may or may not have said, surely he should visit the patient and assess him as well as having those conversations and establishing that he is approaching end of life. He really isn't close. God knows, nursing homes are full of people with dementia and other illnesses of old age who go on for years to the distress of all the family concerned.

My dad is 88 and was diagnosed with Parkinson’s three years ago.

About three months ago, the gp suggested to me that she sort out some JIC medication. Within a couple of days it was there, in a locked box that only a medical professional can open.

He’s still alive so obviously they haven’t been used. The clue’s in the name… just in case. Just in case he gets the sort of infection that could kill him so when he dies he doesn’t feel like he’s drowning, frightened and in pain.

We’re all grateful to the gp and it’s a comfort to know they’re there. Just in case….

I don’t want to sound callous as I’m obviously dealing with a v comparable situation but I think you’re deluding yourselves if you think an 87yo with PD isn’t near death. Of course it could be years and years, it’s not a fatal illness. But it’s really the time to talk about how he might like to manage the inevitable decline. My father, for example, doesn’t want to go into hospital so it’s no more iv antibiotics for him.

I don't know how the care home knew about the prescription @BungleandGeorge
I assumed they must have had some sort of health summary via the GP as part of assessing him for admission for respite care and it must have been on his record. Also one of the reasons I was surprised that they didn't have a DNR/Respect form. I thought they would definitely want one for all their residents.

Though my mother staunchly refused to discuss her mortality right up until the end. She was blighted with osteoporosis and suffered several falls, fractures and hospital stays and operations. Her final fall caused a nasty spiral fracture below the level of a previous femoral pin, and she wasn't expected to survive the operation so the surgeon suddenly rang my sister in a panic as they didn't have a DNR and wanted it sorted before taking her to theatre. The discussion was had over the phone as my sister was driving the grandchildren somewhere leading them to later ask if Great Granny was going to be put down! It's definitely better to have these discussions sooner rather than later!

I completely agree about having the conversation @Valleyofthedollymix

My concern is the drugs are there but the conversation hasn't been had. At least not with FiL. This can't be right.

And tbh I'm not convinced that homes of the elderly up and down the country should have a stash of just in case drugs when death is not imminent. There must be so much wastage! He could have a fall or a stroke and be admitted to hospital and die there leaving the drugs completely unused. Or some deterioration that might mean hospice care was more appropriate.

The guidelines I have looked at state they are for patients "who are deteriorating and when death is expected imminently". That seems appropriate to me.