Trying to understand prognosis - FIL, Stage 4, palliative - but keeps talking about “when he’s better”

[InTheDark2025]

FIL has a “rare and aggressive” cancer - stage 4b diagnosed earlier this year. PILs are reluctant to have any difficult conversations about it and I think are probably in denial - keep talking about when things get back to normal next year. We know they’ve definitely been told any treatment is palliative.

FIL has developed really bad ascites in the last few weeks - he honestly looks like he could give birth to triplets! They’ve drained litres and litres from him but it’s still shockingly large. He’s been discharged with a drain in - sounds like probably they wanted to keep him in longer and he refused.

They only managed 1 round of chemo and the second was “postponed” as he wasn’t well enough. He was talking about having the next round in a couple of weeks and no other appointments in the diary but it just seems so unlikely?!

They just complain about any doctor who gives “bad news” being rude - and won’t let anyone else visit the hospital or attend appointments. It just feels like we’re completely in the dark. DH is struggling massively with the uncertainty and is very quiet and tearful 😞.

Would the ascites be a sign that things are progressing? Would they continue trying chemo when the strain on his body from the fluid must be huge?!

We have no idea is we’re talking weeks or months - at times they’re making DH think it might be years - and it’s so hard having no information to know what to prepare for 💔 I’m really worried we’ll miss the chance to have any conversations about what he’d want as end of life care, as they can’t face what’s happening - they say the hospital ward is awful and I really don’t want him to be stuck there for the end but can’t see any other possibility ☹️

Are you talking about liver disease? British Liver Trust website is good and I think that they have peoplecthat you can speak to.

You could also ring the Macmillan support line. They were helpful when I used them a few years ago.

I'm so sorry OP. It's so difficult when relatives struggle to come to terms with their prognosis. It isn't at all unusual though.

Ascites isn't a great sign, I'm afraid, and doesn't usually signal 'years'. I agree that DH seeking external support from an end of life charity would be helpful. Marie Curie is nonspecific in terms of disease, so helpful if you are in the dark in terms of specific diagnosis.

https://www.mariecurie.org.uk/services/support-line

The ascites really is quite distressing and gets big quick, without knowing him or the condition fully I would say he hasn’t got years. When FIL had this he lasted maybe 8/9 months. The draining got more and more regular, and he just got weaker and weaker. All treatment was stopped when the drainage got to weekly really. Bit we knew this was only palliative anyway. Is usual to have some sort of denial sadly. Does anyone have health POA? Stage 4 cancer is very late stage and not many make it on from that, maybe 5%. I’m so sorry you are going through this. There maybe the senior cancer nurse (CIN) at the hospital that you could discuss this with?

I had exactly the same situation some years ago. My father was in denial and my mum just went with it. I phoned the consultant’s secretary and explained that I understood what my parents were doing and wouldn’t dream of interfering but I needed to know what the true prognosis was. She made an appointment for me to talk with a registrar who explained what I needed to know so I could prepare myself. I hope you and your husband get the information you need. But it may be that I was very lucky that they were prepared to talk to a daughter

There is a fantastic book that deals with this called With the End in Mind by Kathryn Mannix. She's an end of life physician and explains a lot about how to deal with this sort of thing.

I second this. Went through similar with my parents - dad was very unwell and my mum was severely in denial about it all, right up until he actually died. This book brought me a lot of comfort and helped me prepare for the end in my own way. I’ve been recommending it to everyone. I am so very sorry your family is going through this.

Same here, dad did not really engage with the fact he only had a few weeks, even when he was going into the hospital near the end. I also spoke to the consultant separately as often as I could and they were happy to share the information - but then we were NOK and if your mum says she doesnt want to share info, that might be tricky
You could also try his GP and say you are worried about how both your parents are coping. And whatever hospice care is in your area - in some places it might be through a charity like Macmillan or MCurie, in others a separate hospice. Call their advice line and ask how patients are referred to them, and at what point they get involved. Ascites is pretty near the end, to be honest.

My auntie was like that when she was dying of cancer. She kept on saying 'when I am better, we're going to do xyz...' talking about dinner parties and such. We ended up just humouring her and just saying yes, we will do that.
I'm so sorry for you and him. I hope you can try and enjoy what you can with him while he's still here.

I am so sorry you are going through this, it is awful enough but somehow worse when they are in denial because you can't have the conversations you think you should have. It must be incredibly difficult to know you are dying.

Could you look into local hospices? My Mum died in a cancer hospital but it was as lovely a place as you could be in for a hospital. A few years later my MIL died in a hospice which was simply the most beautiful place you could wish to end your days in.

I agree with all of the above posters too, contact the team responsible and see if anyone will provide information and Macmillan were fantastic with my Mum.

Here is a slightly alternative point of view. My husband has a terminal illness. I know exactly what his end of life requirements are, and, since this country has poor end of life laws, we do not discuss this with our adult kids.

We have no accurate prognosis - we’re not in final weeks or days territory, and anything more than that is a guess from the doctors - and so we are continuing to make plans. We keep having to change the bloody things (we should be on holiday now, but my husband was too ill, so we’ve rescheduled for next month). We do discuss stuff we might do later this year, at Christmas, next year. It’s not denial, we know fine well that some of these may not happen, or I’ll be doing them alone, but it is hope and distraction at a time we need both.

it is also possible that your in-laws just see it as their job to protect their kids from some of the harsh realities of the situation, and that it’s better to pretend in front of your husband.

And finally, and I’m sorry if this sounds harsh - it’s your father-in-law’s death, and your mother-in-law’s grief, and how they manage those emotionally is up to them, nobody else. I would go fucking ballistic if my husband’s doctors shared medical info with anyone else, for example.

I'm very sorry you're going through this but I do agree with @ReignOfError .

My mum died from cancer and the suffering it caused her to be given a prognosis and then watch people around her treat it like a ticking countdown above her head was utterly horrific. Let alone the terror she felt at feeling her time ticking away. There were people who started acting like she'd already died because they knew she only had weeks. People who didn't bother buying her Christmas presents because "what's the point, she'll be dead in a few weeks".

I cannot even begin to describe the distress it caused on top of an already extremely distressing situation. I don't think it's necessary at all for someone to be told how long they're expected to live unless they have explicitly requested the information and are going to be supported with the aftermath of disclosing it. I think it's cruel and inhumane to force that information on people.

If I am faced with her situation I intend to tell the doctors that I absolutely do NOT want to be told an expiration date. I want to be able to keep things as normal as possible while I still have life. I don't want to be terrified by a countdown timer or to have people treat me like I'm basically already dead and not worth making nice plans with.

Lots of people feel the same way and decline information about prognosis. They understand what's happening but this is a valid coping strategy, not something to try and "fix" or override. Please don't undermine it.

Did your father give permission to speak to you ? His medical information is confidential.

My FIL was still talking about the future the day he died of cancer, it’s a hard habit to break. Unfortunately you just have to get used to not knowing.

Is ongoing palliative care happening at hospital, home or hospice? Stage 4b and ascites may well mean months or possibly weeks I'm afraid. My dear dad had ascites towards the end. ILs being in denial and thinking about a future is their way of coping. DF was the same. I didn't correct DF, and he only realised 48hrs before he died that this was IT when his lovely GP came to the house with the "just in case" medication and syringe driver (anxiety meds and morphine). Can you contact Macmillan and ask for their advice? Your DH will need support as well as ILs.