To wonder if this is actively dying? Cancer related

[Neverendingdust]

I originally put this on a quieter board with no response so I’ve added it here instead for broader perspective.

Posted before about this (66 yr old) family member with stage 4 Oesophageal cancer with lung mets, treatment was refused after receiving 6 month prognosis (at almost 4 months now). I’m just wondering how others who have experienced this or work in the field would evaluate his current condition.

He had an infection a few weeks ago which has since been seemingly controlled by antibiotics. This last 2 weeks he has started sleeping between 20-22 hours of the day, shutting himself away from others, has minimal urine output, barely eating or drinking anything even in this heat (1-2 Ensures per day, 2 cups of tea at most and very little interest in anything more, the odd ice lolly every other day) His pain was under control using a patch but is now showing signs the dosage may need to increase.

He sleeps very still, you could be forgiven for thinking he had died by the way he looks, his mouth remains open and breathing is very subtle, he no longer snores too which is strange. His hands and feet are pale but not mottled although his overall complexion is a greyish tone.

What is odd is during the few hours he is awake (spread throughout the day in 30 min blocks, at most) he can appear relatively normal, chatting and making jokes for brief moments but soon becomes fatigued again. He is mobile to a point albeit very wobbly.

Hospice at home team are visiting in the mornings but without any regular medical assessment it’s difficult to place where we are in terms of progression.

My question is how long can people survive on just 1-2 Ensures and minimal fluids? He is extremely thin and is essentially wasting away, is this just the gradual decline? Previous cancer death experiences I had were very different situations and not based around malnutrition.

What other signs should we look out for and at what point would you request hospice admission?

The OP is struggling with such a horrendous time, seriously, just scroll on by.

just horrible

I lost my dad to oesophageal cancer with liver mets. He was declining at home until he had a fall which led to internal bleeding. He went into hospital and was put on a driver. When I went in to see him he was semi aware, he roused enough to hug me but then went back to sleep. I was reassured by the macmillan team that this would be the situation for the next few days and it was ok to go home, shower, sleep and come back the following morning. He died before I had driven home. I suspect he needed to say his goodbyes and then let go.

Prior to his fall he had stopped eating, was sleepy, he was dark yellow and had fluid build up (ascites) in his stomach and oedema in his legs. But he was still shuffling about and chatty when awake.

I wish choosing ones own timing of end of life was made easier, at the very least for those already diagnosed as such. The drawn out pain and chaotic nature of timing just puts the dying person and their loved ones under unnecessary further trauma IMHO.

I'm so sorry OP that you and your family are going through this and that the family member with cancer too is going through this.

I have no advice for you, but I feel it's extremely important that people feel able to speak about death. I wanted to counter what was said above.

So, YANBU to ask, no.

I wish you, your family and the relative with cancer, peace, even if can only be only in little moments.

It is awful to watch someone die like this. As you say it is so very protracted and sometimes you just want it to be be over. The point when things become fairly imminent is usually when more analgesia is needed in the form of a syringe driver and bowels stop working but of course it can vary enormously.

If his relatives are coping at home fine, ime the time to consider hospice inpatient care is when home life becomes intolerable for family members for example if the patient becomes distressed or agitated, but if sleeping for hours just take it in turns to sit with him, read a book listen to his favourite music .

@5YearsLeft thank you, I’m very sorry to read about your own situation too 💐

It really would be lucky if he passed in his sleep, as no doubt most of us would want for ourselves.

@Gr33ngr33ngr4ss It’s horrible isn’t it.

@Member869894 thank you, and you’re right it’s very strange and stressful.

@Welshgal78 utterly devastating for your brother, my condolences.

@Hugasauras thank you for those kind words, I’ll be sure to follow this advice.

@123ROLO I’m trying to research as much as possible myself, it’s not easy finding the realities of dying from this. It helps to be informed I agree.

Sounds very much like it to me.

There's a scale called the palliative performance scale which can be roughly used to measure where someone with a terminal diagnosis is along the route to the final stage of life. I'd say he is around 40% at the moment so not quite there yet. Obviously this can vary so much and some people go through the stages much quicker or slower than expected.

With his diagnosis nutrition is always going to be an issue, the malignancy will interrupt the normal digestive process and make it more difficult and less appealing to eat. The goal has changed now, the body is no longer using the energy from food, things are starting to slow down so nutrition is for comfort.

I'm so sorry you are facing this, would he want to be in hospice? It sounds like he is managing pretty well at the moment but things can change in the last few days. If he wants to be in hospice care I would be starting the process now. 💐

I hope the rest of his time is peaceful OP. I’m so sorry you’re going through this.
@Hugasauras i found your post really helpful, thank you.

We always tell people that when the patient begins to spend at least 50% of their time in bed and/or asleep and they don't want to eat much then that is probably the beginning of the end.

I can remember being in the office early one morning and the cleaner chatting to me. She said, the window needs to be open. You need to tell them it's OK to go. They won't go while you're there if they can help it.

She was right. He waited until we left his side for the first time in maybe 36 hours. The nurses ran to find us.

Be kind to yourselves. It's a very difficult time. Xxx

My dad died of cancer, I think he was actively dying for a couple of months (he literally stopped eating). He stopped speaking a week before he died and was in bed with his eyes open but glassy but not moving for four or five days before he passed. He was in hospital for seven weeks before he died.

Two days before he died he was sitting up. He was on a morphine pump and he was so thin. Like something you see in wartime documentaries about concentration camps. He weighed less than our dog. There is no “nice” cancer but to have cancer and be starving to death must be truly awful.

The next day he was talking and even joking but scared of drowning from the fluid in his lungs. He was accepting of death and was not scared of death itself but he was scared of drowning.

I was not expecting hus to die the night that he did, but I was expecting it to be that week.

Hugasaurus your post made me cry. Such a beautiful way of dealing with death. Thank you 🙏

@wingingiteveryday you've posted on a thread about someone's relative dying. Please report your post for deletion and make your own thread in Parenting or somewhere.

I know it seems cruel to not eat, but I do think it's often a natural part of the process of dying. It's not just that they can't eat, they don't want to and it's more stressful for us than for them. My father just stopped eating and my sister tried to force him to eat but he got quite distressed.

The process can go on quite long, I think my dad was actively dying for about two weeks. His nails started to go blue towards the end but he kept breathing for several days after this happened. But occasionally he would not breathe for a while and then start again which was a bit unnerving. He also died in the early morning, which I think is quite common.

So sorry you're going through this.

Hi OP, so sorry to hear about what you’re going through. It’s not a pleasant situation and it can be very hard for loved ones to witness. I’m a district nurse, so I care for patients who are end of life quite regularly.

It can be quite difficult to judge how long someone has left. Everyone is different and even though people may have the same symptoms it’s such an individual journey. People can last varying lengths of time on such little intake, it can be surprising. What kind of difficulties swallowing is he having swallowing wise? You mention he is on a patch for pain; does he have any other pain medication he takes? Is he finding this effective?

As the body shuts down there is a gradual decline - people eat less and sleep more - though sometimes it can be a little drastic; again it’s all quite individual. People can find they have symptoms of nausea, vomiting, pain and agitation. As the disease progresses people can also present with chest secretions too. All of these can be controlled (as much as possible) with medication.

You mention the hospice at home team. Is he currently under the district nurses at all? I’m assuming that he is wanting to have the last days in a hospice, seeing as you mention hospice admission, but there’s also the option to die at home if that’s what he would like. I would advise you contact his GP and request a district nurse referral. Regardless of where he would like to die it’s a good idea to have DN involvement. We are able to set up syringe drivers if required to control symptoms and then we visit daily to replenish these. We are also on hand 24/7 if the patient needs a stat dose of any of the medications if they’re having difficulty with pain for example. Stat doses are taken into account every visit and can be included in the driver going forward. The goal is to reach a therapeutic dose to control the symptoms and keep the patient comfortable. We can liaise with the palliative care nurses too and can do joint visits when required.

If he would like to die in a hospice it would be a good idea to start making those arrangements now, as there is a waiting list and unfortunately sometimes it’s a case of waiting for another to sadly pass away as beds aren’t always available. This is why I’d suggest district nurse input so that he can be monitored on a regular basis - this would be determined by the district nurse on the initial assessment. If he wasn’t on a syringe driver then they wouldn’t necessarily visit every day, but they could accurately assess what his needs may be for monitoring. I would say that being put on a syringe driver doesn’t mean the end is imminent. It’s true some people do pass relatively quickly, but others last a lot longer than you would think. The syringe driver doesn’t bring about the end, it is for symptom control. District nurses can order whatever equipment may be required - a hospital bed for example, or a commode. If he were to stop passing urine for 24 hours for example we would potentially visit to catheterise him. Obviously as time goes on the body will produce less and less, but these things are important to try and prevent other things like urosepsis or urinary retention. The main aim is to make him as comfortable as possible and to ensure he dies in his preferred place, to uphold his wishes and give him a dignified death.

Hopefully some of this helps. One last thing, do not be worried about calling the district nurses out if needed. Too often family members don’t want to call as they feel we are busy etc. I always stress to my patients and their families that if they have any symptoms at all to call us. We can’t accurately gauge how well controlled the symptoms are if we aren’t told. Sometimes patients wait until we visit and then say they’ve been in pain. We can only increase doses if there is the evidence to do so. We’d much prefer you call however many times it takes to make the patient comfortable. And then we can take this into account when we replenish the syringe driver the next day, therefore hopefully hitting that therapeutic dose sooner and consistently. Sending many hugs.

I lost my dad to kidney cancer in 2017, and my mum to lung cancer (with brain metastases) last year. Both were very different experiences, but what you describe is very familiar to the final weeks. Both parents declined more rapidly than expected towards the end.

I'm glad you are receiving help from hospice at home, and have the option of going into a hospice. I struggled to get help with my mum, and the local hospice were not great. I hope the remaining time with your relative is calm and peaceful.

My dad died a couple of years ago of the same cancer spread to lungs and liver. We had a fairly rapid journey from him starting to feel rough at the end of March to dying at the start of June.

He had a palliative surgical procedure in May but never left hospital and got a post operative infection. Whilst that was clearing up he was able to sit up/engage in some conversation (mostly about how much he hated Boris Johnson iirc). Infection cleared up over a week and we then had a day or two of talking about treatment plans and coming home but then he went rapidly down hill and onto the driver.

Was on the driver in hospital for about 10 days where he was in and out of things. He got moved to a single room about 48 hours before he died.

The hospital did a lot of mouth care for him, he had a drip to hydrate him of course and the driver kept him comfortable. He lost his ability to speak fairly early really - didn't really manage to say much for the last 10 days. That was more distressing than the weight loss tbh.

I'm awfully sorry (sleep deprivation). Have already reported and waiting for it to be deleted.

Sorry to hear what you're going through. I just wanted to share a podcast I came across that may be helpful about what to expect when someone is dying. It's a discussion between a guardian journalist and a palliative care doctor. There's also another episode on processing grief. uk-podcasts.co.uk/podcast/conversations-with-annalisa-barbieri/what-to-expect-when-someone-dies-with-dr-kathryn-m

@IsTheOffDutyDoneYet thank you for taking the time to type such a lengthy informative post.

He is under the DN, but I will make sure the family know to call if he experiences any increase in pain. He has the hospice at home help in the mornings but so far he’s able to present a relatively ‘normal’ display for them, awake for their hour visit then asleep the rest of the day. It’s bizarre how he’s sleeping with his mouth fully open in the hot conditions yet not needing to quench his thirst. I can’t fathom how it’s possible.

The swallowing is starting to cause significant pain for liquids and the very few times he tries to eat something he fancies (usually without any success).

He has the hospital bed, commode and some special cushions too. He’s on the patches for medication which are changed weekly, he’s thinking the pain increase is because the patch is almost ready to be changed- can this be the case?

Its so difficult navigating the uncertainties with hospice admission- we’re still unsure at what point it’s best to make the call especially whilst he’s lucid when awake and still kind of walking around to some degree.

My father has very recently passed away from Mesothelioma. He had lived with his diagnosis for a year. The decline at the end was also very fast but had begun with a chest infection he had about three weeks beforehand. Although he recovered from the infection with the help of antibiotics and steroids, all his strength seemed to go from that point.
Eventually he reached a point where he hadn’t been able to eat for 14 days and drink for 5 days. The district nurse put a syringe driver in on the Monday and he passed away on the Thursday.
Sending prayers and strength to you at the difficult time x

I love your post @Hugasauras So thought-provoking and true ❤️

Not a problem, slightly frazzled brain and I know I’ve put a lot in there so hopefully it wasn’t too much.

Ok so that’s great he’s under the DNs. He should be having what we call palliative observation visits. So these can be every week, every two weeks or every four (at least for our team anyway). We can also do alternate days etc if we feels it’s needed. Do you know how often they visit and when they last visited? I wouldn’t hesitate to encourage the family to contact them if they feel there’s been a decline since his last visit. I’m assuming he may have anticipatory meds in place at home as a just in case. If the family have any concerns they can discuss this with the DNS over the phone and/or in person. Sometimes we find that patients put on a ‘brave face’ and they insist everything is fine, when it really isn’t. Obviously we are guided a lot by what we see and what the patient tells us; it’s also useful to have the input of family to help guide us too. The visits are obviously taking a lot out of him and no doubt the weather is too. In terms of the mouth, sometimes people can be like that. We would promote good oral care, so keeping the mouth and lips moist if possible.

In terms of it being painful to swallow this can be an issue too. This can be due to the tumour(s) growing. Some patients say they feel like food and/or drink is getting stuck. It would be good to highlight the swallow issues to the DNS too. I’m sure they’re already aware of it but good to highlight it again.

Glad to hear he has that equipment in place, that’s great. There can sometimes be episodes of breakthrough pain as the patches are coming to an end I believe, but really there shouldn’t be. The level of the drug should really stay as a constant to each change. An increase in pain means a change in requirements, so this needs to be reviewed. It’s really important he’s honest about the level and type of pain he has. They sometimes prescribed liquid oramorph, but patients who are having swallow issues can struggle. Ideally he needs to be reassessed to ascertain whether they need to set up the driver just on the pain front. A lot of this may depend on his current medications and doses as well as any swallow issues.

I would maybe ring the hospice and have a proper discussion regarding where he is at and seek guidance from them too. They can give an idea of beds as well as more specific advice pertaining to his situation.

Ideally get the DNS back out tomorrow (or if the pain isn’t manageable overnight then there are night DNS too) if possible and also discuss with them. They will have the information they need and can do a reassessment to plan what the best way is to move forward.