My name is Linda. My older (51) brother thought he had a toothache back in June of last year found out that it was actually SCC of the sublingual area. In keeping with his usual way of dealing with things, he did nothing but continue to drown his realities with alcohol. I managed to get him to a hospital in S. Fl that following Nov. where he had an MRI. His attending told me what type of cancer it was and he had it on his tongue, tonsils, and throat. Jimmy is indigent so there would be no surgeon willing to take on the responsibility due to his certain lack of compliance. Here we are 3 mo. later and he's a complete mess. I flew him up to me in NC and took him to the ER where they did nothing but tell me to call hospice, which I did and he's now under their care here in my home. The hosp nurse said the whole area under his jaw is tumorous. He's can barely talk and can not chew bc his tongue is twisting and hardened and his teeth are falling out. SO... one of my millions of q's is why does he complain of so much head pain? Will hospice scan him so we know where the cancer is spreading? Do we just treat symptoms w/o knowing where its going? oh mah gosh, my head is spinning...

I am not sure of your questions, but I am so sorry you are witnessing this with your brother. I will keep you both in prayer and guide the physicians caring for him. In my experience, hospice will only try to keep him comfortable. They will not do anything that would attempt to save him or examine him any further unless he is not on hospice care. That is just what I know of hospice care here in Tennessee. Most insurances will not cover any other measures than comfort care.

Oh Linda, this is such a sad story. You have obviously tried very hard to help your Brother. It sounds like his tumour is now so extensive that there is no treatment available for a cure.
Hospice is for end of life care. Their job is to provide physical care and ease the patients suffering with adequate pain meds.
I would ask them about getting a PEG inserted into his abdomen as a means of both feeding and hydrating him.
I'm guessing that he has head pain from the huge size of the tumour pressing on structures in the head and on nerves.
As I'm not from the USA I can't comment further on your Hospice system. However I would want to sit down with one of the Docs and a Nurse involved in his care and discuss exactly what they know about Jimmy's cancer, it's spread and what is likely to happen next. Also what they plan and have to offer to you all.
Thinking of you all,
Tammy

Im so sorry to hear about your brother. being his caregiver must be the most difficult thing you have every gone thru. I cant even begin to imagine how hard this is on you.

As far as the pain goes, it could be the tumor is pressing on nerves causing his pain. You can ask about the feeding tube but I would doubt it would be given. From what I understand of hospice they will not give life supporting tools to patients. Their job is to medicate and keep the patient comfortable. Hospice staff are specially trained and should be able to answer many of your questions, especially about end of life things. We can help with moral support and any questions about OC.

This is going to be a long hard road for you. I admire your strength being able to handle this terrible situation. Your brother is a very fortunate man, I hope he appreciates everything you have done for him.

Best wishes!

I can certainly see how this would make your head spin. Unfortunately I am also one of those family members who can provide little help on what hospice can and can't do.

My limited understanding is they limit themselves to minimizing pain and they do it via pain meds. When my father was in hospice for end stage alzheimers a feeding tube was considered to provide some nutrition. It was just as quickly ruled out because in the doctors opinion he would've ripped it out and created an infection problem on top of his malnutrition problem. The only way to prevent it being ripped out would've been to restrain him with straps and that was deemed to be cruelty.

In light of your brothers long term lack of interest in his medical condition would he even stand for a feeding tube?

Good luck Linda, we will all be thinking of you.

Tony

Linda,

I'm sorry to hear about your brother. There's nothing easy about this journey you are on.

You can sit down with the Hospice social worker and ask all the questions you need answers to. As Tammy says, it is for end of life issues. As a general rule, any "treatment" other than palliative care is not allowed. Diagnostic workups and such are also not allowed in hospice. Even ER visits for the same disease issues are not allowed. The main charge is to keep the patient comfortable. Please make sure they are doing everything possible as far as comfort care. Pain is only one piece that makes people comfortable. Hydration and some kind of nutrition could improve comfort. They can also provide you with help around the house, volunteers to help your brother, spiritual counseling and comfort for you, too.

Your Hospice agency may have some specific guidelines that you need to know.

I'm so sorry you are having to experience this. My heart goes out to you.

Linda,

Thank you for finding us here. You have a heart of gold and can be of the most help to engage hospice as much as possible to address the comfort for your brother.

I want to say, get him to the doctor but if he has proven to not be willing to accept doctor care and treatments, then you are doing all you can and have to take comfort with that fact.

Lean on hospice as much as you can.


Don

Linda I think you've been given some valuable information. I don't have much to add other than I'm sorry about what you are going through. And Tammy is right his pain Is likely related to nerve involvement. The hospice/homecare should be working to keep his pain under control. This has to be one of the worst cancers in the way it manifests itself and it's impact on day to day life. Hugs and many blessings to you.

Wow! thanks you guys... nothing like someone understanding what many can not. I'm so glad I stumbled upon this sight and you l are so warm and comforting.