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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:
feellikeanalien · 10/08/2023 22:48

OP we had those drugs delivered when my late DP was in the last stages of lung cancer but they were brought by the district nurses who were caring for him. They explained to me what they were and why they were needed but, as other pps have said, they were for administration by syringe and were for the use of the district nurses and palliative care nurses. This was only a few days before he died and was part of his ongoing care.

As it turned out most of them remained unused but what you have described sounds appalling. Leaving dangerous drugs on someone's doorstep is absolutely unbelievable.

lljkk · 10/08/2023 22:49

I think you're right to try to get to bottom of what's happened, OP.

But... be prepared for any possible answer. Things no one told you, completely wrong info (your MIL may have told you), a prescribing cock up, etc. I've heard the story too many times about the relatives not being told full story about a patient's prognosis, with the patient themselves being the worst source for giving out completely wrong information.

TappingTed · 10/08/2023 22:50

It really is a big fuss tbh… is it in a JIC box? They are sealed for a start… what do you think medication itself is going to DO? Spontaneously combust and overdose your in-laws whilst they sleep?

I just don’t see the huge deal and think your MIL is a drama queen and is stirring up stuff to get you guys all frothing at the mouth when really all that needs to be done is a phone call to say these drugs have been delivered in error please collect them.

Scattersaurus · 10/08/2023 22:52

I absolutely sympathise with those who have cared for loved ones dying of cancer and recognise how appropriate use of these types of drugs will help them have a peaceful end. And also how difficult it is to obtain prescriptions of any sort let alone CDs in the middle of the night or at weekends, so of course there are sound reasons for prescriptions of this sort and I'm very glad PPs have found them helpful.

My problem is that they have been inappropriately prescribed for an elderly man who is not in the final stages of life. I find that very concerning.

OP posts:
Ohmylovejune · 10/08/2023 22:53

They are just in case. Mums gave anti sickness, pain relief and agitation. They come with a diary to trace use and there isn't much in the box. We were waiting on another prescription for more when Mum died and she had only had 2 nurse visits.

SarahC50 · 10/08/2023 22:57

Does he still have capacity? Does your husband have POA for finances and for health.

If he doesn't have it for his health then they won't discuss it with your DH without fil consent.

Was it possible the drugs were prescribed following unsettled/challenging behaviour in the care home?

I don't think the police would be interested as they have been prescribed for him,even if there was a drug error it wouldn't be a police matter.

Often such drug packages are delivered to the home for administration by the district nurses.

Is mil able to speak to the GP practise tomorrow and find out the rationale behind the prescribing?

Most importantly I think you need to calm down, you are verging on hysteria. None of this will help an elderly couple cope with their situation. You don't want your stress and anger to unsettle them

TappingTed · 10/08/2023 22:58

My problem is that they have been inappropriately prescribed for an elderly man who is not in the final stages of life. I find that very concerning.

I just don’t see why you’re so concerned? Genuinely. 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. If he has capacity why can’t he sort this out himself? Just ask for them to be collected as they’re not needed and ask for an appt to ask why they are on his record as being prescribed… the Drs don’t just randomly write JIC prescriptions when they fancy it so there must be an explanation- maybe his respite care home stay was wrongly recorded as a decline in health?

OverCCCs · 10/08/2023 22:58

I understand why you’re so upset, OP. To everyone saying they’re prescribed “just in case” so don’t be bothered—well, why doesn’t everyone have a box on hand, then? Theoretically plenty of seemingly young and healthy people could get unexpectedly ill and pass at anytime. Covid did just happen, after all.

OP’s FIL isn’t critical or near dying so why should he have one “just in case” any more than someone who had surgery to fix a bad knee?

WandaWonder · 10/08/2023 23:00

Scattersaurus · 10/08/2023 22:52

I absolutely sympathise with those who have cared for loved ones dying of cancer and recognise how appropriate use of these types of drugs will help them have a peaceful end. And also how difficult it is to obtain prescriptions of any sort let alone CDs in the middle of the night or at weekends, so of course there are sound reasons for prescriptions of this sort and I'm very glad PPs have found them helpful.

My problem is that they have been inappropriately prescribed for an elderly man who is not in the final stages of life. I find that very concerning.

That is according to you

TappingTed · 10/08/2023 23:02

OverCCCs · 10/08/2023 22:58

I understand why you’re so upset, OP. To everyone saying they’re prescribed “just in case” so don’t be bothered—well, why doesn’t everyone have a box on hand, then? Theoretically plenty of seemingly young and healthy people could get unexpectedly ill and pass at anytime. Covid did just happen, after all.

OP’s FIL isn’t critical or near dying so why should he have one “just in case” any more than someone who had surgery to fix a bad knee?

He is 87 with Parkinson’s disease that is bad enough to require a week in a care home for respite for his wife. It may well be that the Dr believes he in in the final stages of PD and that it is better to have the medication (which could have a long shelf life) to hand if it is needed rather than have a wait for it in case of a sudden decline. But this should have been discussed and documented somewhere. What if it was with FIL but not MIL? We don’t know, but if he has capacity then it’s possibly been discussed and he didn’t want to upset anyone.

saraclara · 10/08/2023 23:04

WandaWonder · 10/08/2023 23:00

That is according to you

Oh come on. There's no way OP wouldn't know if her FIL was end of life! At the point a JIC pack would be prescribed, the person would be clearly very sick. And the care home would have been informed of the illness.

Scattersaurus · 10/08/2023 23:04

@SarahC50
Well the practice manager stated that the POA was for if he didn't have capacity but as he does they won't deal with us.
That said as he hasn't been seen by a doctor recently no one has done a formal capacity assessment. 🤷‍♀️

The drugs were prescribed and delivered to their home address BEFORE he went into the care home. They have been very helpful and were quite happy with his mental state, no concerns about capacity.

OP posts:
SarahC50 · 10/08/2023 23:07

@Scattersaurus if your fil has capacity then his health needs are his business there may be alot more going on than you know. He could have a diagnosis that he chooses not to share

Scattersaurus · 10/08/2023 23:07

Exactly @OverCCCs
We are all on the pathway to death, it's just some of us are a bit closer than others. But maybe we should all have a well stocked medinas cupboard "just in case" 🤷‍♀️

No need for all those arguments about assisted suicide in that case.
What a saving for the state.

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

Prescribed by who? And then if you know who- that’s who the discussion needs to be with. But the discussion would be between FIL and his Doctor and not you guys unless he gives permission.
It sounds like a not very ideal situation but honestly it Changes nothing in the grand scheme of things… so I don’t see what the big deal is… just get them returned if you don’t want them. No harm done.

SarahC50 · 10/08/2023 23:08

Could the care home have requested the drugs be prescribed for possible use during his care home stay?

TappingTed · 10/08/2023 23:09

SarahC50 · 10/08/2023 23:08

Could the care home have requested the drugs be prescribed for possible use during his care home stay?

No they couldn’t. It doesn’t work like that

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.

OP posts:
TappingTed · 10/08/2023 23:13

DNACPR is not related to JIC medication. You can have one without the other. Wait til the regular GP is back and let FIL give permission for him to speak to DH. And meantime just get MIL to call the pharmacy and ask them to collect the unwanted medications, or she can drop them off there. No biggie.

SkinnyMalinkyLankyLegs · 10/08/2023 23:13

Scattersaurus · 10/08/2023 23:04

@SarahC50
Well the practice manager stated that the POA was for if he didn't have capacity but as he does they won't deal with us.
That said as he hasn't been seen by a doctor recently no one has done a formal capacity assessment. 🤷‍♀️

The drugs were prescribed and delivered to their home address BEFORE he went into the care home. They have been very helpful and were quite happy with his mental state, no concerns about capacity.

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.

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:
SkinnyMalinkyLankyLegs · 10/08/2023 23:16

^assuming the POA is for health...

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.

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:
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.

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