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Having a difficult time at the minute with elderly parents.
My Dad has been in hospital for months, and was discharged two or three weeks ago. The hospital never mentioned any issues, but he's been on a severe decline since coming home. He's mentally sharp, but now immobile.
The nurse wanted to ease his pain, and suggested fitting a 'driver' to dispense Oxycodone Hydrochloride 24x7, and suggested starting at 2.5mg per day. Within a few days they'd bumped it up to 15mg without giving any option. The nurse was adamant that reducing pain was her priority.
However, Dad is now in a really bad way. I think the nurses are treating him as 'end of life' and aren't bothered about giving him hydration or his current medication. For the past couple of days he's been pretty much out of the game, although when he has 'come to' we've spoon-fed him liquids and light soup\custards. I was woken by some noises coming from his room at 3am this morning, and spent a few hours feeding him, and he was communicating - some faltering speech, and opening mouth when read for feeding etc. He was twitching a little bit, too. We eventually got the doctor to authorise reducing the Oxycodone Hydrochloride to 12.5mg this morning, and he seemed a bit brighter until lunchtime. Now, he's 'sleeping' but can't be roused.
We're wondering if the Oxycodone Hydrochloride has anything to do with this. Is it likely to 'knock him out' and reduce speech etc? Earlier he was asking, "What's happening to me?"
I'm also wondering about dosage - how long does it take for a lower dosage to come into effect (eg the reduction from 15mg to 12.5mg)?
Would reducing the dosage further or removing the driver altogether help?
I think Dad would prefer to have his normal faculties and a bit more pain rather than no pain and living in a declining comatose state.
Is there any other medication which can help with severe pain?
It sounds very much like he is being treated in a palliative sense, and that the aim of the team looking after him is to avoid him being in any pain. Oxycodone is a synthetic opioid and will act like other opioids to make him appear as you describe.
Talk to the people responsible for his care about how it is being handled.
It sounds from what you've described like he is dying, and the options or choices are how that process occurs.
Talk to the people involved.
Really difficult situation. Sorry to hear you ( and him) are going thru this especially as you seem to have been given little information
What Crikey says. that would appear to be "end of life" treatment but it should have been discussed with family / NOK. Is your mother able to discuss it? MY guess would be that he wanted to die at home hence the discharge and this had all been agreed before discharge but thats just my guess / best practice
I think Dad would prefer to have his normal faculties and a bit more pain
End of life care should always be done in accordance with the persons wishes. My mother ( I have discussed it with her) would rather be aware but I have also looked after others who wanted to just sleep away
Would reducing the dosage further or removing the driver altogether help?
Is there any other medication which can help with severe pain?
All serious painkillers will cause drowsiness. At this point withdrawing the driver will not be easy as some tolerance / dependency is possible. Reducing dosage is possible however
The normal rule for increasing doses in the continued presence of pain is no more than a 50% increase per day. This is to reduce the risk of toxicity. In. Frail person, you would increase dosing slower than this. This is also on the assumption that the pain is responsive to opioid type analgesics.
Your fathers wishes should be respected about getting the right balance between pain control and side effects. I would imagine that if he is an older person, it could take a day or two for the effects of a modest daily dose reduction to be observed. Older people are more sensitive to side effects and usually slower to recover from them. It is possible that his drowsiness is a combination effect from the oxycodone and his underlying condition.
In terms of alternative analgesics pretty much all of them have the potential to cause drowsiness and confusion. Oxycodone is often better tolerated than morphine. The crucial thing is to increase doses modestly and monitor effects before increasing further. This minimises side effects. Quite often initial side effects such as nausea can ease after a few days but this is variable from patient to patient and may depend on other drugs being taken and the underlying condition. The development of constipation, which is very common, can add to discomfort and confusion.
The NHS constitution says no decision about me, without me. Therefore you are not being unreasonable in being concerned and seeking advice, reassurance and review of his treatment.
Hope this is of some help and hope you can get your concerns addressed by the GP and nurses. Regardless of the medicines, I am sure this is a very distressing situation anyway.
Thanks very much. It's so difficult, and Mum has a bit of dementia, too. I've cried a few times in recent days, just thinking of little things. It's going to be hard to bear.
While you're thinking of everybody else, don't forget to be kind to yourself.
All ^ that is sensible - esp crikey's second one. Give yourself some space & time
Yr dad should have been given a discharge letter and you'd hope that there's something in there about ongoing intentions but regardless of that, you have a right to be informed & involved
you have a right to be informed & involved
especially if mum has dementia
Look for the discharge letter - it should be there and phone the GP for a chat / ask the district nurses
Sorry to hear this OP.
Very much agree with the posts above. The clinicians will be trying to find a balance of giving adequate pain relief to give comfort whilst avoiding adverse effects and excess sedation. This can be a tricky balance to find against a background of possible declining general health and does rely on making adjustments based on response, but with the general approach being go slow and monitor.
The description you give does sound like perhaps the dose has been increased perhaps a bit too quickly or to a slightly too high dose. The sedation and twitching are signs of this and sounds right to lower the dose as the GP has done.
As mentioned, Oxycodone is often better tolerated than Morphine which can build up toxic waste products if your kidneys are not working well. However it is still cleared by the kidneys so can build up if they’re not functioning as normal which can often happen towards the end of life. We typically switch to another opioid in this situation called Alfentanil which tends to be better tolerated. However there are a number of factors that would come into play in any given situation and different areas may have different treatment approaches or local guidelines.
The important thing as mentioned is to discuss with the clinicians if you have any concerns. If your father is at home, he will have limited input from the GP and community nurses and your observations on how he is responding to the treatment will be important and I’m sure will influence the management decisions.
It sounds like you’re doing the right things though but as above, look after yourself too and ask for support yourself if you’re struggling. There may be support services such as a local hospice that can help you which the GP should be able to signpost to.
Also sorry to hear about this.
Dad went from being lucid, but had issues where chest infections were always a problem, but he's as difficult and as stubborn as you can get, and always beat them, though sometimes it took a while.
Then they insisted he be put on a machine that dosed him with whatever the medication is. 2 days down the line and he's in a coma and they called us in to say death was near and really only a matter of hours. But dad being stubborn as he was, and worked at the top of his field in a high stress environment(defence as principle engineer) somehow managed to keep going for 11 more days. They told us it was imminent, hours they said, not 11 days. To my mind it is the machine that caused his death. Im upset about this nhs procedure for making mum agree to put him on it. I have no doubt whatsoever that had he been left to his own devices, he would have recovered, and it was the constant drip of a medicine thats seemingly designed to drain your system and bring about death.
I understand this might not be the case and in truth is is good for some patients, but I do feel that it hastens death, and without it theres still a chance he could pull through. People do tend to try to keep going, and although he might come back around, death ios , i cant say imminent, or that a parent can last years or might be prone to further infections and pass naturally. But on palliative sedation, its what the end cause is. Im also sorry if this is upsetting, but i do feel strongly that this was the direct cause in the loss of my own dad, and theres hardly a day goes by without him in my thoughts.