Do hospitals let you know when someone is dying?

[AKAanothername]

My DH is currently in hospital, he has inoperable pancreatic cancer and it has now progressed and is causing all sorts of other issues.

The worst issue at the moment is that his sodium levels are at 111 and they are struggling to increase them, he's also suffering from malignant ascites and portal hypertension.

The doctor has mentioned putting a DNR in place but, although I've tried my best to explain it to him, I'm not sure DH fully understands this (he's a little confused at times due to the low sodium).

Reading between the lines, it seems that they are actively treating what they can but they are expecting one or other of his organs to start failing and it's unlikely that he can recover from this. DH is unable to 'read between the lines' and he's fairly confident that he'll be out soon (not sure whether that's just bravado or what he's really thinking).

I know that the cancer can't be treated, it's terminal and I think that the current issues mean it will be sooner rather than later. Will the doctors actually tell us this or am I supposed to keep second-guessing them?

I really need to try and prepare his mum for this, I've been keeping her updated and she knows he's very unwell but I don't want to tell her that he's likely to die soon unless it's confirmed.

My wonderful MIL passed from pancreatic cancer last year. When she was finally admitted the last stages were very quick, but when they put in a syringe driver the nurses were very clear that it is likely she would pass within 24 hours.

I was actually away with work at the time when I got the call from my DH to come back and go to the hospital (we had only left a few days ago- she was two hours away).

She left us just over 24 hours later. She had held on through the night so everyone had gone home for a short break in the early afternoon. As soon as the family reunited back at the hospital, she passed within 15 minutes.

Her decline was very swift (less than a week) and unexpected but the staff were very clear with the family that this was likely the end, and were clear when people needed to come say goodbye.

My experience with my father was in 2 stages.
After a few days after being admitted, met with consultant's who said they could not operate and explained why. They said there was no treatment. And I needed them to spell it out to me that this meant he would die and the time span (not years/monthsbut days) and we needed to think about hospice/hospital/home care., pain relief etc.

The next stage was the actual late stages of dying. The hospital explained to me the breathing, what was happening, how he most likely could hear me. So I knew there no longer days but hours.

I think once his care team realised I wanted them to be upfront, honest and direct it was easier for me, I couldn't cope with the fluffy language around it.

Kathryn Mannix is helpful
in understanding the dying process. She is a palliative care expert https://m.youtube.com/watch?v=CZDDByT0Vr0

Bluebells1970 · Today 10:14
My dad died from liver cancer in January and I found we had to push push push to get any answers from anyone.

On his last day, I'd spent 3 hours sat with him but needed to whizz back and let my dogs out. The nurse didn't say a word when I said I'd be back shortly. They then rang 15 minutes later to say he'd gone when I went back in to sit with him, she then said "oh yes I knew he didn't have long". I was absolutely heartbroken that he died alone

@Bluebells1970 the nurse could hand handled that a lot better but please take comfort from me and other posters. Very similar happened with my DF - DM and I had sat with him all day and we left the hospital around 10pm. He died at 10.20 and I choose to believe that he waited ❤️

She has a brilliant book on palliative care. I listened to on audible after my FIL died in palliative care. I gave a great perspective on death and end of life and personally I found a comfort to understand more about it.

Yes sometimes the particular”doctor speak” they use is so euphemistic, especially when you are tired and stressed, that it doesn’t hit home. I’m sorry you weren’t prepared Seaside85 💐

Some hospitals have a palliative care consultant. If there is one then I would recommend you ask to see them.
There is a point when normal life sustaining /prolonging medication can be withdrawn as there is no hope of recovery and the patient made comfortable.

When my mum was dying the hospital were still "treating" her right to the last day. She was fully mentally alert but dying of heart failure. She begged a nurse to "let her go" and luckily the palliative care consultant was there and saw mum.
He talked to her at length and then to us. He said that often doctors are yrained to prolong life at all costs and don't always recognise end stage. He arranged for her to have pain relief and nothing else. She was immensley grateful and died 12 hours later.

As to letting family know with my parents and in laws we got a phone call in the night to say come quickly the end is imminent.

They said that anyone who would want to see her should come.

This really is a statement that the end is near

@Bluebells1970
On his last day, I'd spent 3 hours sat with him but needed to whizz back and let my dogs out. The nurse didn't say a word when I said I'd be back shortly. They then rang 15 minutes later to say he'd gone when I went back in to sit with him, she then said "oh yes I knew he didn't have long". I was absolutely heartbroken that he died alone

Something I have heard from friends who are doctors is that sometimes patients seem to wait until they are alone to die. So, if family are there all the time that they seem to wait until they pop to the loo or walk out of the room for a coffee to finally pass. Please don't be too hard on yourself.

I am so sorry for all of you that have been through similar situations, it's such a rollercoaster of emotions and utterly heartbreaking.

DH seemed much brighter today, his speech was better and he was less muddled so it looks like they're planning on sending him home. His sodium levels haven't improved but they're stable, we saw the consultant and she said that there wasn't anything more they could do to try and increase them.

He's on sodium tablets rather than a drip as he can't have too much fluid so he'll need to keep taking those but as he's only on tablets in hospital he might as well be at home taking tablets. We will be referred to the palliative care/community nursing team and they will visit regularly and be there should we need any additional help.

I asked about the outlook and she said she couldn't estimate, so I guess it's just a case of waiting.

Thank you for all the helpful words and advice, I think I'll be referring back to this thread frequently over the next few (?) weeks.

Sending love and strength @AKAanothername 💗

If your DH can spend his remaining time at home and YOU are supported to manage, then I hope this is a good outcome for you.

When my late DH was ill, I thought it was terminal and asked about his prognosis i.e. confirmation of that and/or a rough timescale of how long he had left. All they said was he would be fine if he did not get an infection, as if he would be well. This meant he was not referred to palliative care, no help from MacMillan nurses when at home, no option to claim disability benefits or free prescriptions. He lived around three months after I asked.
On the day he died he was in hospital and they did phone me early in the morning to say I should come in. Very similar happened with another family member.

Just a thought about DNR. It is a wholly medical decision ultimately and (in a critical medical situation) they will not continue to resuscitate if they think that doing so will not be in the best interests of a patient who is on a palliative pathway. CPR is brutal and all too often unsuccessful, even in an otherwise 'healthy' patient.

I'm sorry you're going through this op.

I am so sorry you are going through this @AKAanothername , its the hardest of journeys to take. I would still encourage MIL to come and see him as soon as possible.

Where we are the palliative care team will probably check in weekly if he is settled and his symptoms are well managed, same with the community nurses unless he needs medication to be given to control symptoms. The community nurses often offer a 24 hour service so are available to ring in a crisis. If they think he has short weeks left to live then they can organise a package of care to help you care for him at home, if that's where he would prefer to be.

+1 for all the posters who find that doctors can often be hard to pin down on this.
I can see why - for all the people (like we were) who need to know if they should ask for time off work and how much, if they should get friends and family to visit NOW, etc etc, there are people who will kick off unhelpfully when told their loved one is on the way out, and take it badly if the time estimate is way out (which it can be!).

Still drives me mad though.
I remember being rung at 2am and, befuddled, we were told that FiL was "poorly" - it was 2am and it was our first rodeo - we thought, "of course he's poorly, he's dying of cancer, wtf are they ringing us at 2am to tell us this!" and went back to sleep. Luckily he was still there the next morning, but OMG would it have been so bad to say, "we.think.he's.dying.come.in.now"?!

Decades later I had the same trouble tracking down doctors and getting straight answers. Even the palliative care nurse, an experienced and helpful woman, went out of the room and had an exchange (which Mum's partner accidentally overheard) with another nurse where she clearly implied Mum might not last the whole weekend. Would have been helpful if she'd taken us aside to say that - particularly as that estimate was correct:(

My dad was in a hospice for the last week of his life with bowel cancer, I had been at his bedside the whole time then I was told to go home as it wasn't going to be today, as soon as I got home the phone went and we all rushed back to the hospice to be greeted by the nurse in tears saying, "sorry he has just gone" I think in this case its different as we were all aware he was at end of life and spent time with him, and it was just very sad he died literally 10 minutes after me being sent home saying it wasn't going to happen that night.

I am so sorry for what you are going through and like others have said, I would ask the consultant.

Such a kind and insightful post.

I met with ICU consultant when my DM was transferred with what would now be sepsis and was told she was gravely ill. I stayed with her as she was in a hospital 40 miles from her home
2 days later a lovely nurse answered my question by saying " she has a look, she will go today"
I spent the day but then I had a very strong feeling to go home.
Just as we got in the door, we had a call to say she had gone
I think she waited until I got home
We then back up to sit with her
I think you need to ask directly and get across its fine to be blunt with you. I'm very sorry you're going through this and I hope you have support

I will always be grateful to the nurse who called me about my mother, saying she wasn't supposed to call until she'd been seen by the doctor again, but the nurse wanted to advise me to go asap. The day before they'd been talking about moving her to a convalescent hospital, so it was an unexpected downturn. I was able to speak with my Mum for a short time before she became incoherent, and shared a last joke with her about her pillow of all things. An hour or so later, and I wouldn't have had that.

I'm so sorry that you're going through this and I wish you and your family much strength.

In my experience it can sometimes be a bit unclear when death is near. I've been called to say goodbye when they didn't go that day, or in one case even year (miraculous recovery from complication of a still progressive disease) and nobody was called when gran died because although she was in hospital with late stage cancer there hadn't been any change and then she was suddenly dead. I think she just went and didn't suffer so that's good.

As for DNR, if someone has a terminal illness that would be best. A resusitation is brutal, they frequently (accidentally) break your ribs because that's how hard they pound (and that could easily be anything from 10-40 minutes) and if you do survive you will be in agony for months from it. It is such a severe beating that they give the body to keep the heart going. No point in causing someone to live in agony for months if they're dieing anyway. I don't want to scare anyone but that is what resus is and that's why a DNR is sometimes the kind thing to do.

I'm so sorry to hear about this OP - big hugs.

My DMum died last year. It was hard my aunt was of where there is life there is hope camp and refused to recognise DMum was dying despite being a former nurse and could not accept it. The consultant sat us down and told us they had done all they could but unfortunately the situation was "futile", it was hard but I was relieved to know and say goodbye. However my aunt's attitude was very stressful to deal with and made me extremely upset. She then blamed the doctor for my Dmum's death which was very unfair as there is a time when DNR is kindest.

With my sister they did give us the heads up about her chances - they kept trying to treat her but we're very clear about how sick she was. They told my brother in law to get us home immediately once they'd confirmed how aggressive it was. They weren't very far out in their estimates. Sending you love

I'm not a doctor but I've worked in a hospital for 20 years treating patients and in my experience, there is a period where the timeline isn't clear and a few alternative management plans are possibilities depending on how the patient responds and people do surprise you in rallying for short periods. It's very hard for staff to be clear because they are waiting to see certain things in order to know what's happening.

But once it's clear the end of life is coming, it's very clear and the staff are very good and make sure everyone knows and understands.

Thank you again for all your kind messages.

He's home now and fairly stable. I've spoken to one of the specialist nurses and asked about life expectancy. She seems to think it could be weeks or a few months but all it will take is for one thing to go wrong and then he's likely to
deteriorate very rapidly. He was discharged with a whole load of 'just in case' (the paperwork actually says end of life) drugs for the palliative care team to administer if things do start going wrong.

Very selfishly, I'm not sure I like the fact that it's now all my responsibility. I love my husband and will do everything I can for him but it's quite daunting. Hopefully, I won't feel quite so overwhelmed once we've had contact from the palliative care team next week.

When my dad was dying, I felt I had to read between the lines, which I’m not very good at. I asked his consultant if he was coming home, and he said ‘doesn’t believe that he’ll recover from this episode’ so I wasn’t any clearer. I had to leave the hospital as he was in a high dependency ward so didn’t believe they thought it to be imminent.

that night I got a call to come immediately, and I waited for other family members and the consultant in charge was very worried about family getting there in time.

i think some dr’s expect you to read between the lines and some will be more upfront, factor in the patients condition and it can be a very confusing time if it’s not particularly obvious or immediate.

I hope you have some support and sending strength in this difficult time x