Refusing treatment for lung cancer

[reinventionn]

It seems my uncle (dad's brother, 71) has lung cancer. Apparently the nodule has been there for a while but is now starting to rear it's ugly head a bit more.

We're not particularly close but he's fond of me and my sibling and he's followed us on facebook, though in the last year or so he's increased the communication a bit more, which is all good. He and my dad never really got along and my dad died a few years back anyway and at that time they hadn't spoken for years.

Uncle lives in the US, in a campervan! He's quite eccentric I suppose (I suspect ASD), married for a short while in the 80s, never had kids, and has been on his own ever since. He loves his van, totally free from real commitments and responsibility and then goes off to Mexico every year for a few months to "escape the LA winter". Lives off a small pension as far as I can tell.

He said he'll refuse all treatment for the cancer. I do wonder if he actually can't afford it but given his quirks it also doesn't surprise me. He says he's in a really great place mentally and what will be will be and that he could have a few months or a few years, who knows etc.

So I respect his decision massively, but I guess I'm a bit concerned about how he'll cope on a day to day basis. If he doesn't have treatment, how long is likely to have? Is he likely to be in pain? Would he be taken into hospital or a hospice? I don't know how it works in the US... I don't think it's that I feel a sense of duty to him, I haven't seen him for 20 years and we chat occasionally online (birthdays, Christmas, the odd meme or something), but it's weird to think of a family member relatively alone, without a fixed address just waiting for what I can only assume is not very nice end. My dad died of an industrial cancer and his decline was horrible, but he had us around him, and in the end went to a hospice. That was bad enough but I can't imagine not having any of that support.

Not sure why I'm posting really, there's been a lot of death of around me this week and I'm feeling pensive I suppose. But what is the decline like with lung cancer? Will he be in pain? I have no idea what type of cancer it is, but will it be years or will it be months? What kind of provisions are there in the US for end of life care for someone who I assume has basic or little to no health insurance?

Sorry to hear he has lung cancer. My dad had it. There are 2 main types of lung cancer. I think one progresses alot quicker than the other. Have they offered him radiotherapy? My dad had part of his lung removed then radiotherapy he didnt really have any side effects from the radiotherapy and we think that gave him a bit more time. He tried chemo but it made him very unwell so that was stopped. I believe there are also newer immunotherapy treatments. My dad had nearly 4 years between diagnosis and passing away age 82. He was never in pain, the last 6 months deteriorated pretty fast. Roy castle lung charity have some useful info. 💐

My mother and grandmother died of lung cancer. Both the same type but both progressed differently. My grandmother's spread to her brain and my mother's to her hip and liver.

My mother had 8 months from diagnosis, that was with radiotherapy and chemotherapy. This was in 2013.

It depends what type he has and if it has spread? Do you know if it has?

My dear friend died from lung cancer. She spent her last year attending hospital appointments and having chemo which made her feel awful. I wouldn’t do it, palliative treatment only and try enjoy the time left.

@reinventionn

I'm in the US. Obvs your uncle has the right to refuse treatment.

As far as 'cost', if he has 'regular-type' insurance it will pay for around 80% of his treatment, the other 20% will be his responsibility although many hospitals will negotiate copays for those who don't have the means to pay.

If he is determined 'medically indigent' he'll qualify for Medicaid (known as Medi-Cal) in California. It normally pays all costs if you have no insurance, but your options are more limited as to service providers. If he has income, he may have a 'share of costs' depending on the amount of his income. A person with 'regular' insurance can also meet qualifications for Medicaid/Medi-Cal and the program will help pay any copays after he meets a 'share of cost' depending on his income.

Federal as well as state laws say that no one can needing acute care can be turned away from a hospital nor discharged from a hospital with no place to go due to inability to pay. So if he becomes so ill he can no longer care for himself he will be admitted to a hospital. The medical social workers at the hospital will help him file for Medicaid/Medi-Cal during his in-patient stay. The hospital will stabilize him, then find a place for him in either a hospice or nursing home.

Medicaid/Medi-Cal is open to US citizens and 'Green Card' holders. I don't know where your uncle falls within those categories.

People here on visas or are undocumented are not eligible. But even so, a hospital will still have to accept and stabilize them.

It's obviously different for everyone, but my mother handled the chemo very well with just mild fatigue.

She went from not being able to walk *she had a hip replacement) and very weak to having a summer in the garden.

Thank you so much @AcrossthePond55 thats all really good to know. He’s now as US citizen, so I guess that will help and sounds like there are systems to ensure he’ll be supported somehow. My dad, albeit with a different cancer, was in pain and very out of it with drugs for about the last 4-5 months of his life, and the last 2 months were pretty unbearable. His final 2 weeks in a hospice were a relief for everyone, it was an incredible level of support compared to trying to manage at home. I hope my uncle can have the same.

I don’t think prolonging his life is his aim, I think enjoying and continuing his freedom is more important to him. How long that freedom will last with a terminal illness I’ve no idea.

I don’t know what type of lung cancer it is. Don’t think he’s ever been a smoker if that makes a difference to type. He had mentioned before that it seemed to be slow-growing.

@reinventionn

I don’t think prolonging his life is his aim, I think enjoying and continuing his freedom is more important to him. How long that freedom will last with a terminal illness I’ve no idea.

My brother is the same as your uncle. He was a musician and has always lived the laissez faire life. He's always said that if he got cancer/terminal illness he'd refuse treatment and when he felt he was 'done with it' he'd take advantage of living in a 'Right to Die' state. I respect that decision.

All you need to do is say to him, if you need me I will come, it is that simple.