To want to know how they know he has less than 2 weeks to live? NHS Euthanasia?

[EOLQ]

Evening all.

We've been told today my dad has less than 2 weeks to live.

He has a rare neuro-degenerative condition that's been worsening for a number of years. So while we've known it's coming and is what he's wanted for the last couple of years hearing this news today was still a shock.

But what myself and family can't quite figure out is what caused today to be the day we were told it's so close to the end.

As to me he seems similar to a couple of weeks ago. Maybe even a bit brighter than some of the worse days.

Anyone with end of life knowledge able to help me out?

He has had a lot of fluid on his lungs which has worsened a lot the last week or two. He doesn't for have the strength or muscle capacity to clear it. But is on a medication (a patch behind his ear) which has really helped that.

So is the fluid, even though it's being managed a sign?

He has a bad UTI which won't respond to ABs. Is that the reason?

Or - today he was fitted with a syringe driver to have his morphine and now midazolam (?) administered 24/7.

So I guess I'm wondering do they know once that medication starts so does the clock? A family member said to me that it's the NHS version of euthanasia.

But can that really be the case?

I'm sorry to hear this op

From my understanding, if the uti is very bad and his kidneys are affected then the toxins can't be filtered and enter the bloodstream. This in turn effects the liver as it tries to process what the kidneys couldn't. And if his lungs have fluid that they can't clear, it leads to effectively, everything starting to shut down

We had something similar in the family but with heart failure. Once the organs started to not work effectively, he passed within a week

I wish him peace op

Usually when someone is administered a syringe drive it means they’re close to the end. Their pain is no longer really manageable and the morphine is usually there to ease them into death. Sorry my love, but recently had a FM pass the same.

I'm no expert but if they've provided morphine in that way, it's probably to keep him comfortable as there is nothing more they can do.

When my dad was dying, he just stopped eating and only had icecream or water. That's a common sign.

The time frame maybe off but I guess they are saying it will be soon. They said my dad had 18 months and two weeks later 6 months, but he ended up dying after 2 weeks.

Perking up is a common thing too...my dad could barely speak for days, then was totally fine the day before he died. It was so strange.

Basically... don't go by timeframes. Tell him you love him every time you say goodbye and give him as many hugs as you can. It's a horrible horrible process to go through and you have my utter sympathy.

Sorry to hear that you are in this position
It sounds like it’s a combination of lots of different things
When my DF was classed as end of life no time scales were given other than in their experience his organs were gradually shutting down and that was on average less than 6 weeks
It turned out to be nearer 3 months he obviously wasn’t ready to go
Our experience was definitely not euthanasia he was given everything he needed - food via tube, fluids and meds including pain relief for comfort only
My thoughts are with you - we were lucky it was peaceful and dignified and felt like the right thing
Still hard for those who are left

My Dad was told he had 3-6 months, he lasted the 6 months.
He died 3 weeks ago, he had the driver put in on a friday and died the following Thursday. They hadn't expected him to last the weekend.
The meds were increased a lot in the last 24 hours.

Thanks for your replies. And well wishes.

Honestly if he were a pet we'd have said goodbye a long time ago, so while it's sad the time is near it's the best thing for him.

Thanks for the explanations. And sorry that you've been through similar.

It sounds as though they're expecting his lungs to fill with fluid - this happens quickly and he's likely close to the threshold for breathlessness and low oxygen levels.

When this happens sedation via a syringe driver is required until decompensation occurs and the body shuts down due to lack of oxygen. The sedation is needed as the experience is otherwise potentially distressing

It's a horrible feeling of wanting him to stop suffering but at the same time not wanting him to go. I really couldn't comprehend him about to die near the end, even though I knew for a long time it was coming.

A question for doctors to ask themselves that has been found to be relatively good at predicting remaining time (it's very imprecise) is 'would i be surprised if this person died within x time'.

In my experience palliative care teams rarely give precise numbers of weeks or days but will say things like 'short weeks' 'short days'. Could it possibly have been that someone misspoke 'two weeks' when they meant 'short weeks'.

The NHS really dies not do euthanasia, though rogue doctors very unusually do head that way (Shipman, Gosport) - these are outlier cases.

Theres a difference between euthanasia and not battling an inevitable natural process. But I am sorry for what you are going through.

It's not euthanasia as such, it just helps
The patient slip away comfortably instead of in pain when their organs are irreversibly shutting down.
I'm so sorry op, look after yourselves x

OP I am sorry that your father is dying. It’s really hard.

But no, it s not euthanasia. Or because the HCP’s caring for him can’t be bothered to do more or because he is too old/costing too much and so on. This is the medical staff trying to manage your father’s symptoms so that he does not suffer. My suggestion, without knowing the specifics, is that they have reached the end of what they can do for him and there is no more to offer. It sounds like they have tried some things- antibiotics for instance- but this has not worked and so they have concluded that further invasive things or subjecting him to more treatment will not alter the outcome and risks causing him discomfort or distress for no possible benefit. In other words, it is futile and not in his best interests any longer. So they have called a halt and told you this, so that you are aware of how things stand.

I am guessing the patch behind the ear is a hyoscine patch. If so, this medication will (to some degree) dry up secretions in the upper airways so can reduce the noisey breathing sounds but it will not reduce the amount of fluid in the lungs. He has had antibiotics but these are not working and his body has not fought off the infection- there is only one outcome of that, sadly.

The morphine is for pain and possibly for shortness of breath, the midazolam is to reduce agitation or distress (which can happen due to infection, delirium, because a patient is short of breath, or due to agitation which occurs at the end of life as the brain is not working as it should- or a combination of these factors). It is true that, especially in high doses, these medications can sometimes cause respiratory depression (reduce drive to breath) and in some cases MAY hasten death by a short period but this is hard to judge/prove and is not the intention. Most families prefer their loved one to spend their last days or hours comfortable and undistressed, even if it means the medication that is given to do this may cause sleepiness or even reduce their lives by minutes or a few hours.

I’ve heard patients can ‘perk up’ when they’re near the end. I don’t think people understand why it happens but it does tend to be ‘common’. I know some people view it as a last hurrah and take solace that way.

I can’t imagine what you’re going through. I’m so sorry. I’ll be thinking of you and your family tonight. X

I think feet start to go darker when the end is near.

My Dad completely perked up a couple of days before he died, I had read it could happen so knew not to read too much into it. It was still very hard though. He went from not speaking and moving to sitting up singing Don't Cry For Me Argentina full pelt (no idea why he choose that song!)
He went downhill very rapidly after it happened.

@jacks11

Thanks I really appreciate your lengthy reply. It's helps me to know more about what's going on. And I'd rather not be asking these questions in front on my parents.

The care Dad has received, especially these last few months, and the support for my mum has been amazing. So I hope my post didn't sound like I thought the NHS had given up on him.

He wouldn't want them to do anything even if they could. So if this is all to make him as comfortable as possible then perfect.

It's all totally his wishes. He wants no intervention to stop death at all. No peg tube or resuscitation etc. His illness means his swallowing and speech are very affected so that makes everything a lot harder too.

When he was still able he spent most of his time trying to find a way to get to Dignitas without risking my mum getting in trouble.

The signs are very difficult to read, we cared for my dad at home and the last weeks were tough.I remember googling how we would know when it would happen. He was absolutely going but he seemed in stasis.

Like Cocolapew he had this one strange coherent day after being pretty unresponsive and confused. I am thankful for that.

Oh OP, my heart is with you right now. We cared for our DM at home in her final weeks with the support of our wonderful NHS. It was our, and her choice, she could have stayed in hospital or been in a fantastic hospice but wanted to be home.
They - the GP and nurses supporting us- were very honest about how long she would have and how it would be, and were accurate almost to the day, despite the initial 3-4 month diagnosis from the hospital.
I had the same initial thoughts that you did - this is really just legal euthanasia when it comes to the syringe driver and medication. I was lucky enough to have medical friends to talk to, who explained everything, but yes, there is a point when your loved one can no longer take nutrition, and they go in the syringe driver then there is a clock ticking. We have no regrets. I wish we could have kept our beloved mum with us longer, but we could not. And she died, pain-free, with dignity surrounded by the people who loved her.
And none of that would have happened without the NHS, and their staff, who took care of practicalities that we had never even thought of ( lending us a hospital bed at home, motility equipment, delivering and administering medication, giving emotion support and in) and were very honest with us throughout.

The NHS have not given up on him, they’re trying to ease his path. There’s nothing to be done now than allow him to be pain and discomfort free.
I’m grateful to the NHS for freeing us from any financial burden/decision making when it came to mum. We chose what she wanted and what we thought was right for her without needing to worry whether or not we could afford it. Every decision
was made with that freedom and we are so grateful that that was the case.

The perking up is really common......I remember a friend of my brother in laws who died really young from cancer. He'd been unconscious for days, family and friends were at his bedside waiting for him to die when he suddenly got up like nothing was wrong with him. Tried to use the bathroom and made himself something to eat.

It was heartbreaking and lovely all at the same time.

The main thing at the moment is that your dad isnt in any pain, it's in everyones interests that that's managed well.

My dad passed away at Christmas in 2019, he had Alzheimer’s and developed aspiration pneumonia.
The drs told us that his infection was overwhelming him and they expected him to go overnight or sometime the next day, but he died about 3 hours later that teatime.
The staff were amazing and the care we received was excellent, but I knew when they started to give him midazolam and Glycopyrronium the end was close. (I’m a pharmacy technician) These drugs are very often given at the end of life to keep patients comfortable.

A friend who works in palliative care said sometimes the meds a person is taking to prolong life can cause physical dependency. When those meds are withdrawn because they're no longer useful and doing more harm than good, the driver is partly to medicate these patients through their withdrawal, even though realistically they're not going to reach the other side of that. There's no need for patients to be in withdrawal and suffering from those effects when they pass. I don't know if that's relevant in your relative's case.

We watch for a deterioration in patients condition and can estimate roughly how long they have left from that however since your dad has probably been bed bound for a bit longer than if someone had a malignancy it might have been a bit harder to notice the deterioration.

Is he in a hospice or hospital setting? If so and they have decided the antibiotics are not effectively clearing the infection that's probably one reason why they have said it will be soon. While we are treating an acute infection our goal of care is to treat, so we have to give him antibiotics every few hours, check his fluid balance often by a catheter, check his observations every 4h then often more frequently because his results are becoming worse, do blood tests every day. All this can be very distressing and sore if difficult to find a vein. When he has moved from actively treating an infection to end of life/comfort care the goal of care has changed. We can stop all these unnecessary intrusions and focus on managing his pain and distress and getting as much quality time with family as possible.

It is absolutely not NHS euthanasia, its no longer prolonging life and his suffering.

Perhaps your dad has said to doctors he no longer wants active treatment and that is why it has come as a shock? I'm so sorry, even though it is what he wants it must be so hard as a family, hope you all have plenty support and he is peaceful and pain free.

@AutumnFrolicks

I'm sorry to hear this op

From my understanding, if the uti is very bad and his kidneys are affected then the toxins can't be filtered and enter the bloodstream. This in turn effects the liver as it tries to process what the kidneys couldn't. And if his lungs have fluid that they can't clear, it leads to effectively, everything starting to shut down

We had something similar in the family but with heart failure. Once the organs started to not work effectively, he passed within a week

I wish him peace op

Please don't think this is the NHS version of euthanasia. It really isn't. It's end of life care

I’m so sorry OP.

Just to agree with other posters though, the morphine will be used as pain relief, not at a dose to euthanise. Your relative is misinformed about that.

I cannot add anything else to the lovely messages here, other than to say that the end of life care my dad received was second to none. He had all the things you’ve talked about and he lasted about a week. It absolutely wasn’t NHS euthanasia. If it was, we would have ended his life 48 sooner. Not because he was in pain or suffering (the nurses were amazing) but because his life was over by then.

it’s really hard.