End of life possibility ? Cancer

[UnbalancedMum]

Hi, please forgive my ignorance as I have never experienced this before. I don't seem to be getting a lot of answers from the hospital and I would like some personal experiences/advice please.

My father was diagnosed with penile cancer, after several operations we were told it had spread to his pelvis, lymph nodes in his neck, his ribs and his lungs. He also has a cancerous tumour in his shoulder that has eaten away his shoulderblade. He was given less than 12 months in July. He has tried chemotherapy and has had radio on his shoulder. He has not had any chemo for 5-6 weeks as he has been to unwell and in and out of hospital. We were told at his last CT that despite rounds of chemo to 'manage' him from a palliative point of view that the cancer in his lungs on the nodules had continued to grow.

He was admitted to hospital last Monday with breathing difficulties and trouble swallowing. We were told his lungs were completely white on the scan and filled with fluid and that he also had an infection in them. He was given antibiotics and oxygen, since then he has had increasing stomach pain, inability to open his bowels but can urinate fine. His eating and drinking has slowed down to almost nothing, he sips water when we remind him and tea but eating he's probably only eating a small strawberry or two a day, maybe a few spoons of jelly because it's so difficult to swallow. He has lost his sense of taste too and he says his ears feel blocked. His breathing has deteriorated he is having oxygen continuously and the level is 8, he cannot get more than a few words out without needing to stop and try to catch his breath, even with the mask.

When I ask the doctors/nurses is it getting towards the end now? is there a chance he doesn't have more than a few weeks left? they just tell me everyone is different and they don't know

I've read up on pre-active dying and it sounds like he is in the final stages of his life with the way his breathing and eating is, as if his body is slowly shutting down. His feet have swollen up again too and they get really cold, he's quite restless and fidgety too.

I just want to know if I need to prepare for the worst sooner rather than later and I'm not getting any answers from anyone like it's the elephant in the room and I just don't want him to suffer anymore he seems so tired and weak, the hospital keep saying they want to get him well to get him home but I don't understand how he's going to bounce back from this? given his diagnosis and his breathing difficulties.

Thank you for reading and any advice, please be honest with me.

I'm sorry you're all going through this, OP. I'm not a medical professional in any way, and I really can't advise, but what you're written reminds me so much of how it was when my Dad died. Nobody would say when it would happen, but it was obvious to me that it was coming soon, My Dad didn't go through a lot of the expected stages, but then he died of dementia, not cancer. What made it clear in his case that death was imminent that his breath started smelling sort of like nail varnish (Ketones, apparently). But it's hard to say it that's definitive, I was just desperately looking for signs that it was about to end. It's OK to wish this over. The nurses also told me that they were hoping to get him home, but that didn't happen. Maybe they are trying to be encouraging?

I imagine that if your dad was in a hospice as opposed to hospital they would be focussing more on his comfort and telling you that the end is coming. It's a very different environment.

From what you've shared it sounds very much like it's heading to the end of his life.

What are they doing in terms of treatment? IV fluids/medications? Or just pain management?

With my relative they did not try and preserve life, she was riddled with cancer and it eventually went to her brain, it became impossible to swallow and breathe and we were stuck like that for a week. It was traumatising for all of us. But when she was in her final day, she had a cocktail of amazing pain medication and she eventually drifted off to a deep sleep, still chuckling at some of the stories we were sharing and then she slipped away.

Would hospice care be an option?

PP said about the smell - we had a very potent pear drops smell the day before and that was also attributed to ketosis.

I'm so sorry this is happening, I know that it is torturous. Please do look after yourself during this time too.

I hope that when it is his time, it's peaceful and painless.

Thank you for your responses. He has been seeing a macmillian nurse and an ellenor hospice nurse when he was home. My mum has said she would prefer for him to be in a hospice rather than the hospital.

In regard to medication, he is on oxygen and being given laxatives because he isn't opening his bowels, he's also being given pain relief and steroids. He was on antibiotics, IV and tablet for his infection but the course finished this morning. He's also being given a tablet that is for COPD patients, to help relieve the mucus he brings up or something along those lines we were told.

It's the not knowing what is going on and not being told anything that I'm finding the hardest, this has been really distressing and the thought of him coming home and then having to go through all this again because he is admitted back in for something is playing heavily on my mind. I do not want to lose my dad but I have made my peace with the fact he is terminal and I just don't want it to be a long drawn out suffering process for him.

Is it worth asking more directly

Ie is he on palliative care?
Are they operating on a DNR basis?
Who is his consultant in the hospital on daily ward rounds, might give a clue?
Are they helping with hospice move or dismissing?

Have they talked about his religious beliefs and if he would want someone of his faith to come and see him?

Other than the hospice, as that wasn't relevant for us, these were all part of the steps the hospital took in our case

I am sorry its all so very difficult and exhausting

I am so sorry you are going through this OP. My Dad died of cancer earlier this year that had spread and he sounded similar to your dad towards the end, although I am not a medical professional either. From our experience you have to ask very direct questions. Blunt and to the point. If you want him in a hospice you need to make sure the hospice team are aware of this and that he is on the list. You need to say he wants to die in the hospice, that he doesn't want to die at home. These feel like really difficult things to say out loud but you need to voice how you feel. It helped me to speak to someone I know who is a medical professional who told me that nothing I am saying will be unexpected by the hospice team or doctors. So sorry again, I wish you lots of strength through this difficult time and I hope your dad is at least comfortable.

Just reminded by the poster above, my Dad had signed a DNR and it made it easier to ensure that his care was tailored how he wanted it.

I haven’t been through what you’re going through but when I had my own cancer I found that the only way to get information was to ask very direct questions and be blunt. I had to say that I did want to know everything and not to sugarcoat it as I needed to make arrangements for my baby and family if I was dying - they then started to give my factual information about my situation.

Sorry for what you went through @EweCee, but I completely agree. You need to spell out what you want and also what you want them to talk to you about. Once our hospice team had established we were comfortable with hearing it all the communication was refreshingly blunt and honest. I can't tell you what a difference that made to me, and to my Dad. He also just wanted to know what was happening.

Yeah, it's not you, it's them OP. Hospitals are DREADFUL at this sort of thing.

To be fair though, I think any doctor or nurse with enough experience will have seen mystery sudden passings and improbable rallies, and, more to the point, will have had perfectly sane looking relatives go off on one at them for being upfront about their cancer-riddled ancient loved one being, you know, DYING.

Turn up with a notebook and pen, be civilly persistent, and ask when he is being referred to the palliative team.
Also (see what other posters say as this is out with my experience) ring local hospices and find out how people get admitted.

IME the palliative team were a little more upfront but still kept things to themselves (we overheard them discussing the probability of Mum not lasting the weekend with one of the nurses outside her room. They were right as she went on the Sat.).

I'd be cautious about a move home as your DDad is very ill and something very unpleasant might kick off with no medical staff there to help him.

Your best bet is to buttonhole a doctor junior enough that you might get a semi straight answer. But that can take a weekday of careful lurking.

Have they decided on an upper limit of care that your dad is likely to benefit from in hospital? Does your dad want to be actively treated, ie does he want further antibiotics and treatment if he deteriorated with another infection. If he is known to the macmillan/hospice team it is likely that he already has a DNAR form in place. What does your dad want? I agree you need to have a clear discussion with them. If he is restless and agitated this could be a sign that he is into the last few days or weeks of his life and there are medications available to reduce this agitation, however many of them will make him quite sleepy so it's worth trying to have a discussion with him about what he wants his ceiling of care to be while he is lucid. If he and your family wish for him to be in a hospice then voice this to the team taking care of him, and ask that it's made a priority. Sending you a big un-mumsnetty hug, op.

Hi everyone,

thank you so so much for all your messages and support.

My dad has continued to deteriorate. They have increased his pain relief and he now has it through a syringe into his leg that runs for 24 hours alongside other pain relief and they have increased his oxygen intake. He is being transferred to the Ellenors hospice on Tuesday. They had told us now that it is end of life and there’s nothing more they can do except make him comfortable and help his pain.

He has eaten for the last two days and hasn’t been awake at all today except for to take his medicines through a syringe orally and even then he had his eyes closed. I don’t think it will be long now.

Thank you again for your advice and I’m glad I have some more answers now and he’s going to somewhere that will care for him better. For anyone else going through similar I feel for you as this is the hardest thing I’ve had to go through and watch happen.

I'm sorry to hear this @UnbalancedMum . It is very hard to watch a loved one go through this. I am glad he has the syringe pump going. Don't be afraid to ask staff to top him up with additional doses if he seems to be agitated or uncomfortable. If it's the first time you have been through this it can be really distressing and the fear of the unknown can be horrible. Don't be afraid to ask questions if you're unsure what to expect. I hope that they are able to get him to the hospice comfortably, and that everything from here is as peaceful and comfortable as it possibly can be. X

I am really sorry you are all going through this. I hope that your DF is out of pain and peaceful. I would be ready for anything from any minute to a couple of weeks.

With my Mum it was cold mottled feet and hands that indicated she was near the end. We had plans to take her home but she rapidly deteriorated in the hospital one afternoon and then it was relatively quick (9hrs) for which we were all grateful.

Take care of yourself.

I'm so sorry you're going through this OP. I know the feeling and it's utterly awful

As sensitively as I can say this, when my mum got to this stage, it was extremely quick... gently; he may not have until Tuesday so I would make the most of your time with him if you wish.

I hope you're okay, it really is awful

Thankyou. I have the same feeling. My mum keeps saying we can get him home once the bed and everything has arrived and the hospice will only be temporary but I don’t think he will last that long. It’s awful feeling that way when she just wants him home. It’s such a horrible situation.

I’ll be going to see him tomorrow morning as soon as I have taken the children to school and will stay with him as long as I can.

It is an awful thing to watch happen and afterward be prepared for lots of thoughts and questions you have that will never be answered. Or maybe that’s just me over thinking things.

The Ellener hospice nurses were amazing with my Mum whilst she was in hospital. They managed her pain relief, plus the mucus medication and other sedatives through the syringe driver. She slipped into unconsciousness on Wednesday night and passed away on the Friday very peacefully and they just kept the medication topped up. They’d hoped to move her to a hospice but it happened too quickly - they did move her to a private room and we were allowed to stay with her 24/7. They moved two of the reclining chairs in for us.

Thinking of you @UnbalancedMum - I hope it is peaceful at the end. I sat with my DDad as he died - yes it was very upsetting, but it felt an absolute privilege to be with him as he passed.