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When to look at hospice care

YT3
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My husband is terminal and has been given months to live. We have a young family and are all struggling with the news. He has open tumors all over his lower body and his pain is not well managed. He is now taking 40mg zormorph morning and night with oramoroph at least 3 times a day plus other types of pain relief tablets. He has moments of absolute agony and it's impossible to see him like that. He doesn't want to go to a hospice but I think that they would be able to manage his pain better there. When he speaks to the palliative care team he plays down his pain and because it's not constant they think we are managing. I don't know what to do for the best. Should I tell him to be more honest with them or ring them myself? Should I suggest a stay in the hospice so that they can come up with a plan? My understanding is that he can't have anything more medication, but it's so cruel to watch him wither away in pain. Any suggestions?

  • Dear YT3,

    Thank you for getting in touch and welcome to our online community, I hope you find it supportive. I am sorry to hear that your husband is struggling with his pain. It is understandable that you want to help.

    Pain is common for people living with a terminal illness. Most pain can be controlled with mediations and your husband’s doctor or palliative care team can assess his pain to work out the best treatments for him. Pain can change over time, and it may that the doses of medications that once kept pain settled no longer have the same impact. It is important to be clear and honest about how his pain feels so the team can give the best advice on how to manage his pain, especially in those moments of absolute agony.

    A hospice is a place where people can go for a short time to help get difficult to manage symptoms under control. His palliative care nurse would be able to talk to him about the local hospice and what to expect there.

    We’d encourage your husband to speak directly to his palliative care team about his symptoms as soon as possible. They would want to help and know that he is struggling. Sometimes, people find it difficult to talk about how they feel. If your husband is happy for you to speak to his team about what’s happening, then we would encourage that too. The main focus of his care is that he feels as comfortable as possible so he can have the best quality of life possible.

    Supporting a loved one with cancer can cause a wide range of fears and emotions. Marie Curie also have good information about accessing care and support. Please do your best to look after your emotional and physical well-being.

    This booklet offers advice on supporting children and young people when someone close to them is living with a terminal illness. Our information may also be helpful. Your husband’s palliative care team may also be able to advise you on support services local to you.

    I can see that you are a member of the Carer’s Only forum here on our Online Community. I hope you find that environment supportive and helpful. You may also be interested in our group Supporting someone with incurable cancer. It may also be helpful to give one of our specialist nurses a call. We can take time to go over any concerns or questions you are having, and we are always happy to help.

    I hope this information is helpful but if you have any more questions please don’t hesitate to get back in touch.

    Best wishes,

     

    Jo, Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

    Ref/KS

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