Refusing nutrition

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I’m new here, caring for my husband through his palliative care for a very aggressive neuroendocrine oesophageal cancer that has metastasised to lymph nodes, liver and possibly lungs.

He was only diagnosed seven weeks ago, has been hospitalised twice for tumour bleeding and is now on palliative care at home with a wish for hospice at end of life.

In the last week he has developed a persistent cough. Doctors say his lungs are clear and prescribed a codeine linctus which helps a bit. 
He had a stent fitted four weeks ago, but after just two weeks a scan showed the tumour was growing and compressing it. In the last week he has taken in less and less nutrition. He is on liquid only which is just the Ensure protein drinks really. Last couple of days he has only had one Ensure and today is refusing any. He is drinking some fruit juice\ water drinks that he likes so not concerned about hydration yet.

I  don’t know whether to push him to drink the Ensures or not, I don’t want to make him uncomfortable or make things worse….choking, aspiration into lungs etc. I will ring the community nurses tomorrow for advice.

It is so hard seeing your loved ones not able to take in the nutrition they need.
These last seven weeks have turned our world upside down with very little time to get our affairs in order, especially as he has his own business, so added stress of all that is needed to wind things up.

So sorry for everyone else that finds themselves on this terrible journey.

  • Hi 

    I really feel your pain, my husband is currently in hospital, he got a temperature and I had to take him in hospital on Thursday, they initially thought sepsis  and he is being treated for an infection, he has had five chemo sessions, the last was due tomorrow. He constantly feels sick and his intake of food has been horrendous since chemo three. He has the smallest amounts of food and I mean, bit ice cream, he has ascites and is currently holding about five litres of fluid that will hopefully be drained tomorrow. 
    we have been told the chemo has shrunk the 2cm oesophageal tumour but the liver tumour has grown so all chemo stopped and nothing more can be done, he is really struggling with his blood pressure right now putting pressure on his heart. 
    It’s so heart breaking to watch, I’m sorry I can’t give you the answers, I have realised he will only have what he wants and I don’t force him anymore. 
    you sound like you have definitely been through it in the last seven weeks, what a massive shock, very sad

    Know one thing you are never alone on here, we are all here to help, and support and without others on here to talk to I am not sure how I would have got to this point.

    Take care xxx

  • Hi, 

    I'm so sorry about everything you're both going through. I think you need to speak to your husband about the interventions he wants and doesn't. This can be recorded in his hospital and GP notes, also make sure you carry a copy with you for appointments and if you have to attend A&E. He should have the option of a nasal feeding tube if he wants that, so he could be fed overnight. It works well, but needs to be his choice. My husband tolerated his well and the feeds stopped the weight loss. It would give him more time, but won't improve the quality apart from getting nutrition. The district nurses will make sure you have the support at home that you need. If he needs care overnight speak to macmillan as there are charities that can provide care so you can get your sleep. I was putting this in place when I was caring for my father-in-law, but never got to use it as he declined quickly at the end. I think a long discussion with you, your husband and your clinical nurse specialist would get a lot of things sorted. They will help guide the conversation to make sure you both have the opportunity to say how you see the next few weeks/months working out. I hope this has been helpful and you get a plan in place. Take care, Stephanie. 

  • I’m so sorry to hear what a horrendous time you and your husband are going through. I hope they can get him more comfortable and back home with you soon.

    Sending hugs xxx

  • Thank you for this Stephanie.

    We have completed a Respect form that states no more hospital admission, DNR, manage care at home and hospice for end of life. This was written with a Sue Ryder (cancer charity) nurse.

    we don’t have a clinical nurse specialist, but I will talk to my husband about a nasal feeding tube and if he wants to explore further we will talk with the Sue Ryder / community nurses.