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

They don't at all, my dad had terminal cancer and they tried every last course of antibiotics and would have operated if he'd turned a corner, that was after having cancer for years. Sadly they did have to end the antibiotics the day before he died as they weren't working. It was fine. My dad lived for 4 days longer than they expected and this was in the pandemic when they only called relatives to visit (we were lucky) when they have hours left not days, so I couldn't see anything that hastened my dad's death. It was peaceful and lovely in hospital, I can't quite describe how but if I had to pick a way to go it would have been that. He had pain relief, not much in the way of anything else but he'd not been eating or drinking anyway, by the time the cancer is so advanced it's really difficult, every cell of your body is affected so things aren't as they are when healthy. Good luck to her friend and their family

Any meds that are for long-term benefit (statins, BP meds designed to prevent cardiovascular complications) are generally stopped.

Doctors prescribe "anticipatory meds" - generally one for nausea, one for pain, one for breathlessness/anxiety and one for the secretions people get when EOL.

You may want to read "With the End in Mind" by Kathryn Mannix, as it's a really beautiful explanation of EOL care from a palliative care doctor.

Concerns you've raised are not unxoom feelings from people unfamiliar with death. We dont discuss dying enough so people don't know what to expect. Cases like Shipman have sadly given morphine and EOL analgesia a really scary reputation (some non EOL patients post-op think they're dying if you give morphine for pain relief).

It sounds like she's grieving and naturally wanting someone to blame. Which isn't unusual.

I think if you know the other family you should get in touch to say your mum is still very upset by the two recent deaths and not moving through the stages of grief. That she is still stuck in the anger and blame stage. That you were there for both situations and the situation wasn't as she describes. Also that every situation is different and they should listen to their relative's doctors, not your mum.

And then try and get your mum to shut up, which won't be easy! She's not thinking rationally which is understandable but obvs very, very difficult for the other family. And you. You've had a rough ride op

When my dad died, he wasn't on any regular medication so there was nothing to withdraw.
He was offered food and fluid and declined food but took small sips of fluid between sleeping.
The doctor had prescribed the anticipatory medications, but he never needed them as he was sleeping peacefully most of the time.
He still died

I care for many dying people. It’s a normal part of dying to stop eating and drinking. It’s just that most people have not seen normal dying.
It actually really bothers me how many people honestly believe I went into medicine to starve people to death. I have no idea why they think we’re monsters, or why they choose to hurt others by insisting on sharing their view with grieving people.

In my experience it's almost the opposite, the doctors almost try too much when its apparent for quite a while that the patient will not survive.

Fluids are usually given IV through canulas- often these canulas collapse or are pulled out by the patient etc and then the medical staff have to re-insert them and if this is happening daily or multiple times a day they often decide it's not worth causing the pain/discomfort to the patient.

Hospital generally doesnt withhold food and water, it's more the patients refuse it and often the refuse medications.

With regards to medications, yes a lot of them are stopped but its because theres no point. For example things like statins are stopped because we arent worried about peoples cholesterol if they arent likely to survive or arent eating. (Statins are a long-term medication to prevent future events) A lot of the time when people approach the end their blood pressure and heart rate decrease so therefore they have no need for medications that they were on when they came in to hospital.

It genuinly is all about keeping the patient comfortable and thinking about what's best for them. But sometimes families dont react well and I've seen a lot of accusations towards staff (murder, deliberate suffering, lying about giving meds, trying to free up beds etc).

Majority of times once theyve had time to understand the process and step back and their loved on does pass they thank the staff.

I dont know how to deal with your mum though, is she at the hospital quite a lot and with the family? Maybe speak to them and see if she is bothering/upsetting them and tell them if she over steps to tell her.

Unfortunately I don’t know either my mums friend or the family, so I can’t contact them. But I do wish she’d keep it zipped because the amount of harm she inflicted post both deaths was immeasurable and incredibly traumatic! My dad died 18 months ago and the other relative 5/6 years ago, she was offered counselling by the hospital but refused it. She’s quite aggressive with her views too, not the type to backdown if challenged. I’ve told her how hurtful those words would be to the family but it’s in one ear out of the other

My father went as @Fraaahnces describes. G.P was a family friend and came every day. Dad was at home with us, it was quite a short period of time (2 weeks). I can’t recall exactly but first of all he was eating a small amount of porridge and water, hallucinating, moving around a lot, but very uncoordinated, fell and he was very agitated.

A syringe driver was fitted and then he started to mostly sleep, medication for other ailments was stopped, he was slipping in and out of consciousness and we were wetting his lips.

It was hard for DM, it was only afterwards she realised that his death had been hastened somewhat. (We were relieved as there had been suffering prior to this). If someone is in pain, dying, you want them to pass as peacefully and quickly as possible, with as much dignity as can be afforded. If someone isn’t going to get better, what’s the point in prolonging their suffering.

Does your mum think the doctors are acting illegally? Causing pain? That the sick person could make a full recovery if they weren’t having fluids etc withdrawn?

It was difficult for us as we were initially under the impression my father was going to have chemotherapy. Then it became clear that he was being “helped on his way” as DM described it…. I wish the doctors had told us what was happening, or perhaps we were in so much shock that it didn’t really sink in at the time.

"Helped on their way" how exactly?

As some doctor once put it, ‘They are not dying because they are not eating and drinking. They are not eating and drinking because they are dying.’

An aunt of mine refused food and drink during her last several days. I sat with her a lot and saw her repeatedly closing her mouth and turning her head away. When organs are starting to shut down, they can’t cope with food and drink.

Friend, she was told she had bowel cancer that had spread and was likely incurable, she had scans that showed this, dr diagnosed from scans without a biopsy, mother then went around telling her friend that they were wrong shouldn’t have diagnosed her like that and probably wrong, low and behold biopsy confirmed what dr had said all along. They gave 4/6 weeks but then said they could look at other things, but I don’t know if these were just life extending rather than saving as I’m not close to the detail. Friend was having chemo but I guess it wasn’t working as it was stopped and then she was going to be discharged on palliative care but took a turn and never left hospital.

im sorry for your dad, that must have been incredibly hard! May he rest in peace

Sadly families find this very hard to understand. I've had to stop a lot of well-meaning family members from forcing food into the mouths of dying patients because they believe eating will stop them from dying. Sometimes they've aspirated or even choked.

My mum received end of life care last November. That meant they withdrew all medication and didn't insist she ate or drank. She was 94 and died within 36 hours.Very peacefully with my sisters at her side. It was a good death and I got to speak to her on facetime as not in the UK, to tell her how much we loved her.

I'm a HCP- seen lots of deaths and lost my own family members too.

Grief does funny things to people. They can feel the need to blame someone.

My uncle said after my grandma had died that the hospital failed her and didn't try hard enough. The truth is they did everything and more. I understood as a HCP she was at the end of life - I could see it. I also knew they had tried every option availble. He didn't know. He's never seen someone dying before. So his grei f was complicated by a feeling more could have been done.

Similar scenario with my auntie. Walked into the hospital room and could see immediately she had hours left. She died that night.

I hope if I am in the situation that I given the meds to allow me to die in peace and comfort.

My mother is very very anti dr and nurse, that’s the only way to describe it, she’s on the drs are lazy, GPS are lazy, consultants salaries are destroying the nhs, nurses are greedy wanting a pay rise etc etc train, so it’s grief on top of prejudice and a relative amount of hypochondria too

There have been some lovely replies on here. End of life care is about comfort. There is a point at which the body can't take fluids or nutrition by any means, so continuing to try is incredibly distressing and causes some very uncomfortable side effects.

So instead we give oral care, ensuring that a persons mouth doesn't become dry. We look after their skin to prevent sores. We give only necessary medicines which will relieve symptoms.

It's a privilege to be there at the end of someone's life, we talk to our patients so they know someone is there, we do everything we can to do the best by our patients and their families.

Pallitive Medicine Consultant here…we always look for the reversible (and are delighted to find it!) but sadly if there is nothing we can reverse in the face of advanced illness with no cure we seek comfort…for the patient and their family…the medicalisation of dying brings burdens and trauma for all involved…it is natural as the body slows down to need food and fluids less…they are not withheld but very often are needed less…and medications (often called anticipatory) are used to alleviate symptoms and seek comfort…palliative care neither hastens not prolongs dying…it seeks comfort and dignity and is a privilege to provide…I wish you peace and comfort and kindness x

I absolutely think you should go into palliative care. I wish the nurses had been like you when my dad was in end of life care last year.

I'm sorry OP that you're having to deal with all this.
My Dad died in ICU due to covid related complications, just over 15 months ago. Because of covid, we were only able to see him at the very end of his life.
However, the team looking after him were really kind and explained in very basic terms (as clearly it was a distressing situation) what they would do as they turned some of the machines off and increased his pain relief. And they explained how he would respond. My experience, despite being in awful circumstances, was that the hospital staff went out of their way to do their best to keep my dad comfortable and dignified in his last few moments.

This is a lovely thread full of care. I’ve been there for my father’s death when I was a teen and again later in life for another family member. You could tell when my dad didn’t have long. He was barely drinking and not eating, sleeping, on pain medication, which was contributing to him sleeping long hours.

A few years ago there was a big scandal over a palliative care model called the Liverpool Care Pathway. It was an attempt to translate hospice standard EOL care into hospital and community settings and it was a terrible failure.

There was nothing wrong with the care model per se, it was similar to the care described in the posts here, but it was extremely badly communicated, training was very poor, and decisions were frequently left to junior doctors working alone in the middle of the night.

There was confusion over the word 'pathway'. Instead of being read as a guide for things to consider and assess at each stage of dying, some medics interpreted it as a set of instructions, i.e. you do each thing in order once a patient is 'on the pathway', including sedation, hefty pain relief and the withdrawal of food and fluids. This undoubtedly caused suffering to some patients and robbed them of lucid time with their loved ones.

There was confusion about what 'end of life' meant. The LCP was intended to help plan care in the last few days of someone's life but it was sometimes used as soon as treatment options had been exhausted when patients would otherwise have had weeks or months left. This undoubtedly cut short some people's lives.

There was a government review of LCP in 2013 and you can read the full report here:

www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients

This is likely where your mum's fears come from. Mistakes were made and it was scandalous.

But that was 10 years ago and the report made recommendations which (as far as I know) were implemented. Since the discontinuation of LCP I haven't seen any of those awful news stories about dying patients being refused a drink of water, or relatives returning from a tea break to find their loved one heavily sedated for no other reason than they're now officially dying.

For once it seems that lessons have actually been learned. Hope this is helpful for reassuring your mum.

My mum died last year. She had pneumonia and the antibiotics weren't working and she developed sepsis
They stopped treatment - she had dementia and had stopped eating and drinking (honestly I think she wanted to die and it was the only thing she had control over)
She wasn't really conscious and just opened her eyes occasionally and had drugs to help with any agitation etc, I sat with her and she just stopped, peacefully is the best way of putting it

I always think if you're really sick, you don't tend to want to eat anyway (like if you have flu) and if it was me and I was end of life, I wouldn't want food forcing on me

Thanks to people’s comments (&OP!) for this thread. My DF is on palliative care as of last week, and it’s reassuring to understand that his lack of food & fluid intake is part of a normal physiological change/ process and his withdrawal from the present is ok.

I’m can’t speak for everyone, but just for myself, providing care at the end of life is treated with respect, care and an understanding of how much of a privilege it is just for me to be there. I love providing palliative care. Death is so important, to the patient and their loved ones, it’s an absolute privilege.

Thank you so much @Honeyroar. I feel very passionately about this for a few reasons. My parents both had long, horrible terminal illnesses. Dad was first, and both Medical Directives were very clearly organized by my mum (an ex old-school nurse from the 60’s and early 70’s who hadn’t worked since then, but still held onto those memories/fears/beliefs.) *They both stated that they did not want morphine at the end of their lives, as they believed that it hastened deaths.
They both died at home and while their nursing care was amazing (those nurses were beautiful humans!) they were limited by my parent’s directives. They died agitated and in pain unnecessarily. Everyone - including the nurses were traumatised as a result of this.

I am going to explain a couple of normal phases Dying. **Please note that every death is different and that while these phases are “Normal Symptoms”, not everyone experiences them. There are many others as well.

One is known as “Terminal Agitation.” As a patient begins to enter the “Active Dying Stage”, some of them become quite agitated. It can manifest in many ways, such as confusion, irrational behaviours, dementia-like forgetfulness, paranoia, anger, fear, etc… Morphine really helps the patient (and those caring for the patient) with this.
**My own mother was screaming for help, and then biting and scratching anyone who went near her. What came out of her mouth was even more traumatic. I wish I had known what Terminal Agitation was then. It would have saved a lot of PTSD!

*As for Morphine hastening deaths, please understand that I AM NOT YET PRACTICING. This is my current belief.

This is when the body systems are all shutting down and the brain stem is able to send an implulse to the lungs to provide just enough oxygen to make it to the brain stem, and just enough energy to enable the heart to pump it there via the bloodstream. To the family, it looks like the patient is gulping or gasping for air by that stage. (They’re not - they just don’t need any more.) This can last for a few hours or sometimes a day or two. It can be traumatic to witness, but the patient is not suffering because they’re not aware of anything by this stage anyway. Morphine given during this phase will probably shorten the “air hunger” and potentially this phase, but at what cost? The patient is not in pain and the family is not traumatised.