I'm so worried about my brother in law who is now having home hospice care for leiomyosarcoma in his stomach that has spread to his liver. He's only 58 and was diagnosed with "cancer" on 1st Jan, with the specifics clarified later that month. He started chemo and had about 5 of 6 rounds despite the last two making him incredibly unwell. He was readmitted to hospital 6 weeks ago and was having daily blood transfusions due to his haemoglobin levels being so low. His whitecblood cells were wiped out and platelets also very low. His hgb dropped to a dangerous level 4 hours after a transfusion ended, so he decided that he would rather die at home and was discharged to the hospice team. He was told that he would only have a matter of days to live and it was agreed that he was doing the right thing.
However, he is still alive about 5 weeks after coming home, and some symptoms have improved greatly, so must have been chemo side effects that have worn off. He is on 24hr oxygen, meds for his heart and was meant to be on morphine every 3hrs, but he has asked my sister not to give it to him as often as that. He's completely weak and hasn't eaten for 3 weeks, yet can be lucid and able to watch TV or hold a conversation at times. I'm not sure when he last had a scan to see whether the chemo had shrunk the tumour, and I'm worried that he is being treated as though he's dying when, maybe, he's better than the doctors thought?? I'm not expecting a miracle but concerned that he's being given his doses of morphine to sedate him before he's ready to die. Because they are in the USA, the hospice team work independently of the hospital and he has no right to tests, scans or check ups via the oncology team now that he's signed himself over. His oncologist probably thinks he died weeks ago!
Is this a scenario that you would expect to see or do you think I should convince my sister to contact the hospital team? It feels like a cruel, drawn out death of a man who's body isn't ready to give up and who's mind is still active. I can't help thinking that if he wasn't so dosed up on morphine, he might feel better able to eat, and that the pain and nausea he's only been having recently, are caused by the meds on an empty stomach rather than the cancer. Clearly his bloods must be better than they were otherwise he wouldn't be alive now.
I know it's an big unknown and that it relates to the US health system, but any thoughts are welcome. I'm stuck this side of the Atlantic whilst my sister is mostly alone dealing with her dying husband with no doctor's contact at all.
Regards,
Sam
