Mum refusing food, what will the hospital do?

[minipoodlemum]

My mum is 78 and has stage 4 lung cancer and a lot of other complications such as a swollen ankle and a portal vein thrombosis. She had surgery in January and was noticeably younger and stronger than the other ladies in the ward. She was bright and talkative once she had recovered from her surgery. She was discharged and was very mobile and independent at home. The plan was to have chemotherapy and it all seemed optimistic, even though ultimately she won’t be cured, we had hoped for more time with a decent quality of life.

In the last 6 weeks she has been admitted to hospital 3 times for infections in her ankle. She has honestly aged about 15 years in 6 weeks, and has now been diagnosed with severe frailty. The doctors want to drain the bacteria from her ankle but they say she’s too frail as she barely eats. I was shocked at the difference since January - she has 2-3 glasses of milk and a couple of yoghurts a day. A few weeks ago she was at least choosing something from the menu even if she barely touched it. Now she refuses to listen to the menu options. She doesn’t read much, won’t use her phone. I have no way of communicating with her if I don’t go to see her in hospital, and she doesn’t want conversation - she is miserable and snappy. I brought her magazines and she gave them away, she won’t watch TV or anything. She seems so depressed and bored, she tells me she cries in the night with the pain from her leg. The doctor had a stern word with her yesterday and told her they can’t drain the bacteria from her leg without her becoming stronger.

has anyone been through this? It feels like she has given up way before she needs to. My dad spends every afternoon at her bedside and brings her things. I am 400 miles away so I go up every few weeks and take in extra yoghurts, biscuits, fruit etc. She has no interest in foods that she enjoyed as recently as January. She gets acid reflux so I know it’s unpleasant sometimes. I am wondering what the hospital will do if she is too poorly to go through treatment. Please tell me if there’s anything else I could try.

Is the hospital able to improve her pain relief in her ankle? Can they offer her any support with her mental health?

They are giving her pain relief, which she says doesn’t work but it definitely does something. They haven’t discussed her MH with us - I think the focus has been solely on giving treatment. Last time she was discharged she sent me an email, complaining that she hates what her life has become, with my Dad cooking meals and her loss of independence but I don’t think she is having that conversation with the doctors.

I’m so sorry, this sounds really hard. And so difficult for you as you are so far away. Is it worth asking if she can be referred to the Mental Health Liaison team to see if she is clinically depressed? It sounds like such rapid change in the last few weeks. Sending you and your poor Mum very best wishes.

In all honesty there isn't anything you can do. Your mom refusal to eat usually means she coming to end of life.

I know you won't like hearing that. Your mom is clearly in late stages of the cancer, and you can't make her eat.

I've been through this with my late mom and my late husband. I've experienced this with both of them. It's heartbreaking I know. Enjoy the time you have left is the only thing I can say, and don't tie yourself up in knots with what you cannot change.

Take good care of yourself

I am so sorry you are going through this. I went through similar recently and I found it quite traumatic the way the hospital kept pushing my father to eat when he was refusing and in no state to eat. I would suggest speaking to the palliative care team if possible.

I also found Kathryn Mannix book “With the end in mind” really comforting and helpful when my dad was unwell.

Ask the hospital what they're doing to help with reflux, and control her pain and nausea (beyond having a stern word with her 🙄). If eating is causing discomfort or sickness then they can't blame her for not wanting to. You might need to ask for a pain specialist rather than/in addition to her usual doctor or ward staff.

After that, it depends what would usually tempt her - fresh fruit is fairly hard to come by on hospital menus, and sometimes people will drink Huel/Complan shakes when they won't eat meals so at least you can up the calorie count a bit.

I’d suggest asking for MacMillan input..her health needs are complex. It’s more difficult to manage anything acute, like the infection, with an underlying issue ongoing. MacMillan can help advise on pain management and long term prognosis. You also need to have a chat with her and your Dad about what her choices are going forwards - what would she want treatment wise? When does she want to stop active treatment and be kept comfortable? They are tough on everyone (we had similar with my Mum and the medics were shocked at how candid she was, but she was a nurse and knew better than most). MacMillan can help in guiding conversations and knowing what is on offer.

Posted too soon - I meant to say I’m sorry you’re in this position.(Unmnetty) hugs 🫂

I’d be asking the ward staff if a referral to the hospital social work team has been made.
They can request a joint assessment with health staff regarding your Mum’s capacity in terms of her treatment and refer to the advocacy service.
Hopefully the social work team will request an MDT to discuss treatment. Her pain relief and possible low mood need addressing.

Also, ask if a referral to the dietician has been completed, as well as MacMillan.

Hopefully you will have a very caring team who will discuss your mothers diagnosis and outcome with you fully

I was in the same boat last month, and we decided on comfort and dignity and allowed mum to go in her own time with no attempt at intervention or treatment

It's not easy, it really isnt. I was so lucky that mum got a bed on the Macmillan unit, which was peaceful and calming and she passed in dignity and as pain free as possible

Once she decided she was no longer eating, it was only a few days

(((((HUGS ))))

I'm so sorry OP.

I second a pp re supported discussions about further decisions.

A point is sometimes reached where people have things done "to" them, rather than because they actively want them.

It's a hard place to be and support is invaluable. My best wishes.

It sounds like she desperately needs the palliative care team involved OP for management of her symptoms. If they aren't already supporting her I would demand it. They aren't just for end of life care. They're there to help manage the symptoms and emotional challenges of a palliative diagnosis

Thank you all so much, I didn’t expect so many replies at this time on a Sunday evening, it’s all really helpful. A few of you clearly have some experience of the “you need to be bossy with her” stance, which my dad of course does because he wants her to be treated. The last week I was with her she gained 3lb as I brought fresh clementines and pastries, but she has very little interest in food or treatment. However, she flatly refuses to wear pyjamas all day, wearing proper shoes and nice outfits instead. It’s so weird, I miss the old her. Thanks again for your helpful advice 💐

@suki1964i am so sorry you lost your mum, I am glad it was peaceful and dignified.

Have you had the difficult conversation with her and her doctors about the DNR form? She might not want to be treated? It's her choice at this stage, and im sorry its really hard

Thankyou

It was a bit of a shock tbh, one week she was out driving and getting her bits and pieces, 3 days later we are looking at a huge tumour and waiting the further tests to find out exactly what was going on.

Unfortunately she was too frail and the tumour had engulfed too many organs

It was hard having the DNR conversation. I knew it was for the best for her, ( medical background ) but all the same it was like signing a death warrant - even though realistically I knew it wasn't, that she didnt have long

Dignity and comfort. I think that's what we all want come our ends and mum certainly got that . Ive been there for a good few relatives and friends for their final days and hours, and some ( MIL's included ) have been lacking, being very distressing for everyone

Do push for macmillan intervention , get a macmillan nurse on board , even if its just one that comes and does the ward visit, they come as soon as called and will change the meds as required. MIL didnt get referred and would often wait hours for a Dr to sign off a new script

You know your mum, you need to advocate for her , perhaps even over and above your father

Strength to get through this really difficult upsetting time.

God bless x

The hospital need to be working together on this (a stern word indeed). Your mums case sounds complex enough without stage 4 lung cancer thrown in. They need to be managing her pain properly, no one wants to live in extreme pain, it masks everything else and overrides all her other appetites.

Have you got am idea why she's not eating.. lung cancer can affect swallowing so he be physically harder for her to eat and swallow, although I think that even if this is the case treatment and support would be for comfort.

I know there's a bit of a road to go to sort the situation in the longer term, but I do agree with getting the palliative care team on board as soon as you can. I am sorry that the hospital have not even suggested a visit from them, or a social worker, or some other support system, but that's life today, the squeaky wheel is needed now.

Anyway, if it's any help, since your mother will eat yogurt I'd suggest adding protein powder to them and mixing it all up with maybe a mashed banana also. Just use a larger yogurt tub or a bowl with a lid that you already have. There's no point trying to force food into her, but if you add protein powder and maybe a fortisip drink to a yogurt flavour she likes, it will add calories and might appeal to her.

It's just a suggestion and it might help. I can verify that this combo kept me alive when I couldn't/wouldn't eat much after a stomach surgery issue last year.

Thank you for the further comments. I got her some Lidl yoghurts which she likes and she is drinking a fortified milkshake recommended by the ward staff. I keep a goodie bag on her locker filled with things that she either asks for or ignores. I think she is managing around 1,000 calories on a good day, far less on a bad day. She has been assigned a MacMillan person but says she doesn’t get much help from them. I don’t know if she is telling me the full story though.

They will try and get her to take supplements like ensure. If she is unwilling or unable and her weight is dangerous I guess they could tube feed into nose or even stomach. But I'd hope it wouldn't come to that.

My only experience is with DH's cancer and he was much younger, but I think it's all just part of the process, sadly. He stopped eating much at all in the last few weeks.

I'd talk to McMillian about having her pain relief reviewed.

I remember one day in the hospital they delivered a cup of tiny cubes of perfectly ripe watermelon to my mother. She ate that like it was the most delectable food on the planet. They definitely were strategizing to get her to eat and keep her hydrated in ways other than ivs.

(this particular stay ended up being 5 years before her demise, despite the fact we thought she would not leave the hospital, you just never know)

I have stage 4 lung cancer . What your Mum needs is for her pain to be addressed. Pain is all consuming she will not want to eat and also be very miserable . Someone has to advocate for her and not stop until she is not in pain. I'm lucky to be able to advocate for myself , am on a significant amount if morphine and am able to enjoy my life . I'm mid seventies . Is there a member of the family who could do this and be firm with her consultant! Good luck

I think she needs the palliative care team, urgently. Not because I think she must be at the end, but because they are the experts at living as well as possible with frailty, pain and disease burden. Some consultants don’t like calling them in, so it might take a bit of assertive requesting from you.