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.

Really sorry but he sounds very very sick. And with a sodium of 111 he may be struggling to comprehend what is going on or make decisions, that is an extremely low sodium.

Sometimes the doctors will carry on treating even when they know it's not realistic as they think there is a tiny chance, or that it's what you all want, when really you just want a very honest conversation.

I would ring the hospital and ask to speak to the palliative care team so you can visit when they are there, they are much more likely to be honest and think about what you all want as a family.

Also if he’s confused, as he is likely to be with a sodium that low, he’s unlikely to be able to really understand his situation, so you will probably need to make decisions for him around end of life choices, based on what you think he would have wanted. It’s a really difficult situation to be in for you.

You can't be 'reading between the lines' about this sort of thing op. What they say to your confused, failing dh might be much gentler than the hard truth. It sounds like you need the honesty (even if it might be brutal), so don't be afraid to ask for a few minutes of the consultant's time, away from dh if necessary.

Sorry you're in this place op. Hope you're getting g some support.

If she's not seen him since April, then absolutely MIL should have the chance to see him.

I now have regrets about not inviting my MIL down more often when my DH was sick. He was her son, and she loved him with every fibre of her being, as we all do who have children. But she was 150 miles away and I can't imagine what she was going through.

Now that I have adult children, I can't imagine one of them being terminally ill and not being told or having the chance to spend a little time with them.

I am so sorry to hear about your husband OP. Pancreatic cancer is just the most vile cancer.

My Dad passed away from pancreatic cancer in 2018, I remember he had done exceptionally well for around 3.5 years with various chemotherapy options etc but the last 6 months he couldn’t have chemo due to his blood count not being stable and him needing a stent. He went into hospital beginning of August and didn’t leave eventually passing away in September. They did have a conversation with him about no longer having any treatment options and about keeping him comfortable, he did know he was going to die. As soon as the consultants had that conversation he really ‘gave up the fight’ which I think was a relief in a way to him.

I am really sorry you are going through this as well.

It depends on the doctor.

One consultant was brilliant, she explained exactly what was going on, prognosis, how long she would expect things to take, and when and why they withdrew treatment. Hard to hear but important.

A registrar, on the other hand, would shy away from specifics. He fudged details so the more unrealistic optimistic family members believed the patient would get better whereas those paying closer attention to what he avoided saying could see we were in an end of life situation.

To my mind, it was more cruel to encourage false hope than allow everyone to say their goodbyes.

I agree with PP it’s best to ask to speak to the consultant.

I am sorry you are going through this, and I wish you and your family well.

My husband was the same (died 4 years ago). His elderly dad had no idea how ill he was until right at the end - my husband was trying to protect him but I always felt uncomfortable about it. Does your H have any siblings who can speak to MIL? I v much relied on my H’s brothers to break the news to FIL when the time came.

Re the hospital, no one ever really said how close my H was to the end but we never asked. I think if you don’t ask, they won’t tell you, so if you do want to know, you need to ask. I did get pulled aside to have the DNR conversation and not long after that the palliative care woman came, and my husband was transferred to the hospice. He died the next day.

So sorry you’re going through this, sending strength and love x

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.

We were clearly told and my Dad was clearly told when he was dying. The fact he was definitely dying meant they could treat him with drugs to make him more comfortable and pain free. He wanted to be knocked out with drugs and he was.
The staff were all amazing and so compassionate even though they must be dealing with this type of thing all the time. It really made a huge difference to how we felt about his death. They got it so right.

My Dad really didn't want visitors and I put that above other peoples wishes apart from one of my brothers. My Dad actively didn't want another one of my brothers to visit so we didn't tell him. I've no regrets. We just told that brother he died very quickly so there was no drama.

I’m so sorry for what you are going through.

we’ve had a couple of bereavements recently and by all accounts they kind of tell you as long as they have your details. You have to pick up their clues and sometimes you don’t hear them.

The first was my mum, where I was phoned and told to come to the hospital and to bring close family with us. I expected to find her sat up in bed laughing off the drama as it was she died while they were working on her.

The second was a close friend’s dad who had been ill and had set out the plan to remove food and so called him the first time at night saying hes going please come, but the dad didn’t die that night. Then the same happened a few nights later and then he did die. They called and he was able to make it there.

While the nurse could have been more helpful, it's very very common that people actually hang on until they're alone because it's easier to 'let go' when a loved one isn't actually there. So please release yourself from this aspect of your heartbreak, if you can. 💔

I'm so sorry to hear this and hope you are getting support OP. What a difficult thing to go through. I lost my Dad during the covid pandemic and in my experience the consultants explained to both my Dad, and then separately to my DB and I that there was nothing more they could do. As there were restrictions in place due to covid, we hadn't been able to visit, but we were called in to intensive care when my dad was in the final stages of life, so that we could be with him.

I would ask to speak to the palliative care team and ask them for their advice on his prognosis.
No one will know for sure but they might know how long he is likely to have in terms of days, weeks or months.

I would definitely ask the question. My OH didn't get to see his mum before she died because nobody made it clear to his dad that she was so unwell and he didn't ask.

I’m so sorry about your dad Bluebells1970. 💐💐💐

If it’s any consolation at all, terminal patients often wait to pass away until their family has left or stepped out of the room briefly, when they have been by their bedside for days. It’s a very well known phenomenon. So please try not to feel too badly about not being there. He knew that you loved him.

OP I'm so sorry your DH has pancreatic cancer. My Mum died of it 9 years ago and watching her grow weaker and not be able to eat was very harrowing. In spite of this I'm so glad I spent the last 10 weeks of Mums life caring for her with my 4 sister's in her own home. She didn't have to go into a hospice which she would have hated. We could only do it because there were 5 of us to share the care. I'd ask to speak to the consultant and once I'd had an update I'd share with MiL. I think I'd invite MiL down to visit your DH. You might be glad of her support as the cancer progresses. My Mum had 10 weeks and 1 day from her diagnosis of PC to her death. She had been told she had about 3-4 months left. If your DH is in pain ask for stronger pain relief for him.

My Dad died from pancreatic cancer at home and the McMillan nurse told my Mum to "let him go" as she was constantly trying to get him to wake up etc. This was in the last few days of his life. As regards his situation he had a no resuscitation and in fact we were lucky in that the GP caring for him took active steps with meds to relieve pain , "the side effect being that sometimes the patient's heart would stop". I am forever grateful to that GP. I'm so sorry @AKAanothername and you now have to take the burden of all of this. Invite his mother and while some may criticise what I say , don't try to involve him too much in specifics.

I lost my mum 2 years ago to cancer and the doctors never explicitly said she was dying even on the day she died. It seemed there was a lot of talking around the subject and hoping she would turn a corner. They said that anyone who would want to see her should come. I wish they would have just had been straight with me and said they thought she was dying. It would have been much more helpful and I would have been able to take it.

The doctors will answer your questions as honestly as they can. If you write them down in advance you may find it helps not to forget in the stress of the moment.

A confused patient is no longer competent to create an advanced medical directive (specifying DNR). But his Doctors can still make a DNR medical decision on his behalf , when they judge that it's in his best interest.

That's why they have raised the issue with you, to give you some advance warning, and ascertain your POV. They don't need your consent but some people welcome the knowledge that when nature is ready their loved one won't be held back.
Also it gives you chance to prepare other family members.

I'm so sorry you're facing this. It's very hard to predict when someone will die, but if they think it's imminent, they should say.

I don't think that with a sodium of 111, your DH will be in a position to understand or process what is happening, so I wouldn't even try to tell him. Let him do what he does as long as he is as comfortable as he can be.

I'm so sorry for this awful situation. I found it helpful to say to the docs, "would you be surprised if X lasted another week/month (whatever you think)?" It gave them a fairly simple way to answer. I have used this a few times, and usually got an answer which turned out quite close to the eventual truth. Sending best wishes

Really sorry you are going through this.

I’ve nursed both my Gran and Mum through terminal bowel cancer and in both experiences they were very blunt with us all about how long they thought they had less, so definitely ask if this is what you want to know. However, keep in mind the human body is a very strange thing and you just can’t really predict exactly what’s going to happen. They gave my Mum days and then she rallied and lived for another 8 weeks which completely threw everyone as they were expecting her to pass away in hospital and then they had to frantically try and find her a hospice place. They were spot on with my Gran though, said 6 weeks and she died in the middle of the 6th week.

*left

Low sodium can cause fatigue, confusion and irritability and unfortunately DH seems to have all those. If I try and talk to him to explain things he just gets annoyed because I'm not a doctor, but when he does see a doctor he gets a bit confused and doesn't seem to fully understand what's being said.

Well, none of that stuff is his problem now. He doesnt have anything to decide or organise. It's time for him to let go of the world; and you can help him do that. It will help you both.

IME, as death approaches the person often withdraws, wants to retreat inside themself like a snail into its shell. They don't want explanations; or conversations, or to be asked questions like "how do you feel today ? did you see the DR? have you eaten anything? ".

All he needs is the sound of your voice saying soothing comforting words that require no answers . Tell him your old shared stories. Tell him "I'm right here, I'll stay with you, rest now. "

Definitely helpful to ask outright OP - sometimes HCPs are trying to be kind and guage how open you are to being told the cold, unvarnished truth. Nurses doing the day to day care will likely tell you when they think the end is coming near but as everyone is different, they don't always get it right.