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Original poster

"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:
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MenopauseSucks · 27/06/2024 19:41

@Scattersaurus

Did you ever get to the bottom of the JIC prescription?

Answersunknown · 27/06/2024 19:24

respect forms aren’t used in Scotland very much.

you can’t act as POA if FIL has capacity - something which often gets forgotten. He has the same confidentiality as anyone else.

I don’t believe the practice can collect the drugs, the pharmacy may be able to. Or can be handed back to them or the police for disposal.

all sounds like either fil has given a confusing picture or a confused patient ?

Mischance · 27/06/2024 19:16

This does sound very odd. On one level it is good to know that this is available - but ONLY when appropriate. I know some people find themselves struggling to get the right medication when a loved one is terminally ill - recent Mumsnet thread on this.

WombatChocolate · 27/06/2024 19:05

Oops. Not sure why this popped up in my feed.

MissMoneyFairy · 27/06/2024 18:48

Oops

DaveWatts · 27/06/2024 18:46

Zombie thread!

Though would love to know if OP ever got to the bottom of this

MissMoneyFairy · 27/06/2024 18:44

If, rightly, the gp practice won't speak with you as fil has capacity do you know for definite he hasn't seen a doctor recently. He will see a doctor in the carehome, they have to prescribe his medication, maybe they might have some information but you need fil permission.

MissMoneyFairy · 27/06/2024 18:37

Carehomes do keep jic medicines which are often never used and are prescribed when they seem ok,, it is a waste, they are individual prescriptions so not kept the same way as in a hospital. It doesnt always mean end of life, Ive seen jic never used for years but we still have to count them, maybe its easier to keep them in a carehome rather than wait for when you actually need them and need a prescription. . I dont know why they would be delivered to the house though if he was in the carehome and whoever delivered them usually ask for id and sometimes a signature. A dnr firm won't be completed until the doctor has spoken with the resident unless there was a previous hospital or community one.

WombatChocolate · 27/06/2024 18:16

In the end, the only way to get to the bottom of it is for someone who has authority to ask the health professionals involved.

This could be DFiL or DFiL could go with one of their DC to discuss. Or DFiL could give permission for one of their DC to discuss.

It seems highly likely to me that more has happened/is going on than OP is not aware of. This could be due to a number of possible reasons. Sometimes people choose not to disclose their full condition or the development if their condition to their families. Other times, the patient or their spouse is either forgetful or a little confused and misrepresents details about the health condition or other events such as visits of health professionals, deliveries, meetings, drugs prescribed, info given etc.

This reminds me of the threads where a DC comes home from school and reports an incident or something the teacher has done…and lots of people suggest the parent storms in to show their fury. But usually what happens is that it turns out the OP only had part if the info.

So OP needs to get the info to put her mind at rest and get up to speed with what’s going on….probably getting DH to do so with her in-laws as this relates to them and not her. Being outraged at the delivery of drugs seems like a lot of assumptions have been made by OP that might well be just that ….assumptions and not based on fact.

OP herself says she doubts the drugs were left on the doorstep. Quite likely, other parts of the story are missing or not quite correct too, This is often part of dealing with elderly parents….even those who have been reliable and well, can get to the point where they choose to conceal information or get confused and struggle to reliably describe events.

But I’d assume OPs DH wants to know what’s going on with his parents. It is for him to get to the bottom of this. It seems quite likely to me that there are reasons why these drugs have been issued ‘just in case’ and that discussions were had in advance. These probably relate to his health and the drugs. But OP simply doesn’t know about them.

OP, hope your DH can speak to his parents and between them make co tact with the GP or other health professionals to get to the bottom of it - that might mean an answer that the parents have capacity and don’t want you to know certain info - their choice. It could be that things have happened that they have got confused about. It could be his health has moved on in ways you just don’t know about. An error could have been made. You will only find out by your DH speaking to your parents and possibly then health professionals. But do t simply assume the last option. There are many other more likely possible explanations.

cansu · 13/08/2023 16:34

If your fil has capacity then he can make an appointment to discuss why this prescription has been delivered. If he wants it sil can go to the appointment with him. It is very easy to get rid of the drugs simply take them back to the pharmacy. It may be that there are other diagnoses that you are unaware of. Either that or there has been an error. Regardless you seem to be very angry and dramatic about this.

BlossomCloud · 13/08/2023 10:31

This: If your FIL wants, he can give permission for you to speak directly with the GP on his behalf, and if he doesn’t… then perhaps he knows more than he is letting on and wants privacy.

lljkk · 13/08/2023 10:22

please keep us updated

GrannyAchingsShepherdsHut · 12/08/2023 19:58

OP, do you think FIL would be open to going to the GP with one of his DC to ask the questions they refused to answer to you? It definitely seems they are the ones holding the information on what has happened.

Original poster
Scattersaurus · 12/08/2023 19:21

Also there is this pilot study that was done a few years ago:

www.palliativecarescotland.org.uk/content/publications/14.-Anticipatory-prescribing-for-dying-patients.pdf

Of note, from the audit -

The average length of time the JIC box was available was 12 days (range 1-105 days)

78% of patients required medication from the box. Ie 22% never used it.

It also said they would be prescribed with the patient's consent a few weeks prior to their anticipated death.

My FiL hasn't consented - he hasn't been given the opportunity to. And his death isn't anticipated in a few weeks.

I appreciate that @Valleyofthedollymix and family feel reassured by the availability of the drugs. But they have already been there three months. I'm sorry but this is ridiculous. These old people with Parkinson's are far more likely to have a fall and die in hospital with a fractured hip or similar. The drugs never being used, as happened in 22% of cases in the pilot study. It's incredibly wasteful and not how they were intended to be used. I would say 105 days - the outlier in the study is much longer than intended though I do realise some cancer patients hang on, others die much more quickly than expected. But in any case, that is cancer, not general old age decline.

"Just in case" drugs for terminal patients prescribed for F-I-L who IS NOT terminal!
OP posts:
Original poster
Scattersaurus · 12/08/2023 09:36

I spoke to my local pharmacist yesterday and she said they do dispense "just in case" drugs but it is normally for oncology patients and should be for those who are expected to die soon.

Not for any old elderly person who might take a turn for the worse one day.

I also asked her about drug safety and security - are there any checks to ensure the drugs will be properly stored in the home, that there aren't drug addict children hanging around for instance. The answer is none. No checks.
Is there any policy regarding unused drugs? No. If the person dies the relatives can drop of unused drugs to the pharmacy but there is no reconciliation of usage and wastage/returns.

It's disgraceful. I'm really shocked by it all.

OP posts:
AlfietheSchnauzer · 11/08/2023 17:34

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.

I'm sorry but the fact this happened round about the time he went into the care home for a week is, from what I can tell, no coincidence

Greybeardy · 11/08/2023 16:49

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.

FWIW, while one of haloperidol’s uses is as an antipsychotic (and it can help with hypo-active delirium, which is harder to spot, as well as hyper-active delirium, which is what most non-HCPs are familiar with), its other mechanisms of action are as an anti-emetic and in the treatment of intractable hiccups, both of which are common at end-of-life and both of which are distressing. Its use mainly has naff all to do with ‘chemically coshing’ people.

BusterGonad · 11/08/2023 04:50

I honestly think you're being quite controlling over this, leave it for your FIL and Mil to deal with, why do the whole family need to get involved when it's nothing to do with them? You say they are both capable so why worry. I think FIL going into respite care obviously triggered something.

MissPolliezDolly · 11/08/2023 03:03

And quite frankly I am done being involved in this family drama

Thank goodness for that.

Original poster
Scattersaurus · 11/08/2023 02:08

Also thank you for the explanation @GreyDuck

OP posts:
Original poster
Scattersaurus · 11/08/2023 02:06

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.

OP posts:
Original poster
Scattersaurus · 11/08/2023 02:01

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!

OP posts:
Valleyofthedollymix · 11/08/2023 01:55

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.

Original poster
Scattersaurus · 11/08/2023 01:53

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. Hmm
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.

OP posts:
BungleandGeorge · 11/08/2023 01:27

@GreyDuck which law is that then?

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