Anyone well versed in end of life care?

[Tiddlywinx]

backstory: 2 very close relatives passed away in hospital. Mother is adamant the hospital, drs nurses etc killed them or at least sped up the process. She now has a friend who is sadly eol due to cancer, she’s now started saying ( I really hope not to the family) that the hospital has started to withdraw meds and fluids in an effort to hurry things along.

as she’s said this a lot, it’s quite upsetting (in relation to my family members and in general). When my relative was slipping away my mother heavily emphasised they were being deprived of resources to hasten the process, I recall talking to an ITU consultant and he said there’s no evidence that withholding fluid or food in EoL improves anything so they give patients food or fluid if they want it, but often they don’t and sometimes it’s not safe. I feel like I read something about and EoL patients often because quite water heavy? And adding fluid to that can make them more uncomfortable and making breathing more difficult? Could someone explain it to me please? I don’t quite understand and don’t have anyone to explain in RL.

please be gentle, thank you

I am studying nursing and at the moment I am considering a career in palliative care. I have looked after my grandmother,my parents and am now assisting my father-in-law as he heads into his final stages.

When someone is nearing the end of their lives, they start to sleep a lot. They engage less with the world, have less interest in the future and as they are much less active, they lose their appetite.

As their systems begin to shut down, they will have fewer periods of consciousness and even less requirement for nutrition.

Because they are not conscious or necessarily responsive when they are actively dying, giving a patient fluids orally (apart from gently dampening their lips with a cloth) may actually hurry the process along, because they won’t know be able to swallow anything, and will probably aspirate the fluids and either suffocate or develop aspiration pneumonia.

Because the circulatory system is shutting down also, IV fluids will most likely pool in the body causing oedoema (swelling) putting pressure on the renal, cardiac and respiratory systems and probably increasing the speed at which the patient dies.

There is a YouTube channel called Hospice Nurse Julie. She explains why patients who are in the active dying stage don’t need fluids and nutrition. Maybe your mum would benefit from watching that. (Although she may have already made up her mind.)

@Fraaahnces that is very helpful. My mother is deteriorating but I don't know what to expect.

Thank you! That was really helpful and so well written! I think that’s what I was remembering as being water heavy.

she’s mentioned that they stop meds too? I know this doesn’t mean pain relief right? But maybe the sort of life prolonging meds? I don’t know, would you be able to explain that for me?

thank you for your compassion!

My experience of end of life care is with my dad and sister who both had cancer and had very different deaths. I wouldn’t say fluids and food were withdrawn my dad just didn’t want them. Instead of a big drink he took a sip or we made sure his mouth was moist.

Although I think we were lucky and the actual end was quick. He went to sleep more and slipped into a coma. Meds were given for pain management and help with restlessness. Other meds he’d been on were stopped as there were no need for them. I felt that his death was natural and humane.

My sisters death feels more traumatic but i’m
sure that’s because it lasted longer and took longer for her to get to the point of passing away.
She was never not offered medication or fluids. It was traumatic to witness. Do I think she was in pain? No, I don’t. If we could have done something to ‘speed’ it up would we have considered it? Possibly.

There is no evidence base to support supplementary fluids (either IV or s/c) as the body is shutting down and can no longer process the excess fluids.

As the person slips into unconsciousness they are no longer able to eat or drink but should absolutely be supported to if they are still able and want to before that point.

Relatives often ask for sedation and analgesia where they pervieve agitation and discomort so it's important to get the balance right.

Hcp do not kill EOL pts or do anything to speed up the process

Their aim should always be as dignified a death as possible

Just to add my sisters death was dignified just traumatic for those that were there.

Unfortunately we are all so very removed from death and dying these days. It is frightening and mysterious to us all.
Ultimately nobody can tell you exactly what to expect, but most people go through certain “stages” (if you will) and within those stages there are many “normal” signs and symptoms.
Again, Hospice Nurse Julie is a good resource, so is Hospice Nurse Penny. They’re both American, but it’s a good place to start and it should help to demystify the process. I would also recommend getting in touch with a palliative care team that can come to your home. You shouldn’t be expected to carry the load yourself for what could be weeks or months at a time. Can tell you from experience that it’s exhausting and heartbreaking and you WILL need time out..

I echo what @Fraaahnces says, I’m a community night nurse and spend a lot of my time with those who are dying.
People who are approaching the end of life, maybe the last week or two of life, a lot of the time their body is just unable to process fluids or foods, their body may ‘turn off’ the desire for food and fluids. It would be cruel to force fluids into someone whose body is unable to process it. It would cause suffering.
Drugs wise GP’s tend to stop all oral meds as just swallowing them is risky as the person may choke. Liquid and transdermal pain relief can and should be prescribed as the patient needs and a drug card and supply of Just in Case medication should be arranged. Just in case drugs are used in the final states of life and are injectable drugs used for symptom management. Not all people need them, but I think all people should be given them.

My dad not wanting to eat was definitely a signal that he didn't have long left. They certainly brought out the strong morphine and so on that we'd had prescribed for him so that his passing would not be painful. They kept him comfortable re fluids but I don't think he wanted to drink much either.

When I say given them, I mean a supply of drugs should be given.

When nearing Eol like pp said the body begins shutting down and most times giving food and fluid can speed things up if the patient aspirates. Meds are usually withdrawn if they are deemed to be making no difference meaning they are not likely to bounce back by taking these meds, at this point they may be prescribed eol medications to help with secretions,pain and agitation. These do not speed up the process however they do ensure that the patient is settled and pain free near the end. I've worked in care for years and seen plenty of people at eol and cared for relatives with cancer at eol also. Food and fluids being withdrawn are only done if deemed necessary medication also. They are definitely not doing it to cause them to pass quicker however I can see why some people feel this way as its distressing to see.

@Tiddlywinx i’m sorry for your loss and for your mum dealing with friends approaching end of life care. It is a difficult time for everyone involved and requires open communication between healthcare professionals and families.

a lot of medication has side effects or is given to prevent risk of heart attacks and strokes eg statins look at 10year risk and are prescribed if this is >10% so someone who has weeks or days to live won’t benefit from that.

in terms of swallow risk, if a patient isn’t eating or drinking, taking oral medication becomes a risk of aspiration which can then cause a pneumonia so nursing staff will monitor this closely and when things deteriorate, a decision is made to stop oral/unnecessary medication in the best interest of the patient.

there are specific anticipatory medication for those at end of life to help with symptoms like pain, breathlessness, agitation, secretions and nausea/vomiting. These can be given subcutaneously (small injection) and if requiring more often, can be put in a syringe pump and given continuously over 24 hours.

the aim of palliation is to help a patient that is deteriorating do so with the least discomfort. It’s useful to understand and try to have these conversations before the patient becomes too poorly so their wishes are know beforehand.. clinicians have no interest in causing harm or distress but for those who have terminal illnesses/ chronic long term conditions or dementia at the end of life- recognising disease progression and deterioration and helping to keep them comfortable is the priority.

hope that helps.

My mum (83) was eating the odd mouthful of ice cream or yoghurt up until 3 days before she died, and drinking sips and talking lucidly (between long periods of sleep and confusion) until about 30 hours before she died.

Fluids and antibiotics were stopped 2 days before because the antibiotics weren't working. She was no longer passing urine in any quantities and she was, as you say, water heavy (although I've never heard the term before it's a good description).

During her last 24 hours she did receive morphine and sedatives in response to symptoms, and I am in no doubt that this will have hastened the end by maybe a couple of hours. But she was already close to dying, and deserved the dignity and peace that the medicines gave her. The agitation was difficult to witness.

To the PP whose mum is near the end . It's not possible to predict how it will go, but although it was very sad for us, it was a privilege to help deliver my mum out of this life as she delivered us into it. I hope it's the same for you.

Hi. I'm a nurse. We stop regular medications too because they also become difficult to swallow and also any life sustaining medications ie antibiotics has the potential to drag out the process and leave the patient suffering for longer. This is also hard for the families to watch.

We concentrate on what we call comfort care medications that are for symptom management in the last days of life. Pain relief to help with any pain. Sedatives to prevent agitation. Then a medication that helps with their breathing as the fluid and secretions builds up in their lungs.

All of these are very small doses at regular intervals. We tend to let the family decide what they want to be done. Either we can assess the patient at regular intervals if the family wishes or they can be left in peace to be with their dying relative and inform us if they feel any medications are required. It's the same with pressure relief. We ask the family what they would prefer. Some like regular turns, other wish to be left alone.

It's a very sensitive time and we do our best to make it as dignified and (for want of a better word) nice as it possibly can be.

What a wonderfully informative and compassionate thread.
The very best of Mumsnet. Thank you.

if people want to read or listen more I would also recommend Dr Katherine Mannix, a now retired palliative care consultant who does a lot of demystifying the process of death.

One way of thinking about it is that often, patients aren't dying because they are not eating and drinking more they are not eating and drinking BECAUSE they are dying. Whenever I talk to family members I try and frame it like that. It's innate to want to feed and nurture people through oral intake and it often feels cruel and difficult to not see that happening but as has been said already, it really is part and parcel of the end of life process to ensure it is as comfortable and dignified as possible.

All, thank you for taking the time to share your professional knowledge, whilst I thought I knew certain things, I guess I wasn’t 100% on their rational, thanks for explaining and clarifying, it’s actually a huge weight off. When my father (one of the relatives who passed) was slipping away my mother used to scream and shout murder, sadly audibly to DF who still understood what was happening until the very end, I can only imagine that scared him, but it also made the whole experience so much harder for me. You all have lightened my load.

i worry she’ll be saying similar things to the family of her friend and first hand I know how much more difficult that will make everything for them, especially for her friends children

Yes I have the same conversations @goldenfolder it’s very normal of us to want to feed and water our loved ones when they’re unwell, on the sofa, bowl
of chicken soup, feed them up, make them strong. I explain that their loved ones bodies are slowly switching off, that the thirst and hunger we around them feel, their loved ones don’t feel that. There is no distress from no oral intake as the body doesn’t want it any more, it doesn’t need to be sustained.

I’m sorry that was distressing for you @Tiddlywinx , I am sure your presence and love will have brought him untold comfort.

Second recommendation for Dr Kathrine Mannix. Her book ‘with the end in mind‘ is in places a sad/hard read, but it does explain normal dying very well.

ive just received this message from her

‘Family said she was good up until 3 days ago- had that dignified death speech as I had! Then surprise surprise don’t understand why deteriorating so quickly then dugs food and water withheld forcing the body to fail together with drug line - like done to your dad. Told them this!!!’

she’s telling the bereaved family this, which from experience I know is deeply traumatising. I’ve told her to keep her opinions on this to herself, but obviously she’s not listening. Anytbing I can say to combat this?

My dad died of old age (and Alzheimers) at home last week. In the last weeks of his life he ate less and less and during the last few days eating anything at all made him vomit - the gp told us that as death approaches the body's organs start shutting down and digestion is one of the first to go . Then towards the very end he stopped producing urine (kidneys packed up) and oedema started. He lost the ability to swallow his tablets 3 days before his death which probably hastened things but death was a release for him by that point. It wasn't a beautiful death but it was largely peaceful and he suffered very little.

Also, re agitation & gasping, etc….
Morphine is often given at this stage because it depresses the “air hunger” helps calm the body and stop the “gasping” (This is often not even always genuine breaths at this stage, but residual movement caused by the brainstem)

The trouble with adding supplementary fluids at eol stage is that as the body shuts down it doesn’t pump the fluid around the vascular system the way it should. Consequently fluid ends up flooding the lungs and making the person more breathless and less comfortable. That’s why we try and steer away from supplementary fluid at the end stage.

some people find death very hard to handle and I can understand your mums reaction when your df was passing. Especially if it was traumatic ( I’m assuming that from your
mentiom of icu) . Did she have any bereavement counselling after that? It’s not uncommon for relatives of icu patients to develop ptsd as a result of the experience of having a loved one ill enough to be in icu. I wonder if her response to dying is a reaction to that. She sounds angry? That can also be part of the grieving process.

If it’s a conversation you can have with her it may be worth exploring her feelings about dying and your df and see if she would be open to counselling. Some people aren’t open to that so don’t be disappointed if that’s also the case.
It sounds hard for you.