BIL cancer and way forward

[SweetSunshineSA]

I have name changed for this as I am a long time poster but have never spoken about this part of our lives in detail as its not something we center our lives around but its there nonetheless.

There is a lot of detail to the this (as its a lifetime) and I cant possibly tell the whole story without writing a novel, so please ask questions if you feel they are relevant and excuse me if I dont cover all the information upfront. Also, we are not in the UK.

My DHs brother, my BIL has not had a very productive life as an adult. He hasnt held down a relationship or marriage for longer than two years, is generally a difficult character with strange ideas, he has been financially reckless to the point of almost living on the street and has never looked after his health. My DH wouldnt consider their relationship close but if you had to ask my BIL he would say that they are. Its a strange dynamic of a younger brother being the one who has always looked after the older brother due to his bad decisions and inability to 'grow up'. My BIL would say this out of love but my DH would say it was out of obligation. Neither of their parents are alive anymore so they are each others only immediate blood relations (besides for kids). My BIL has a daughter in her early twenties from a short marriage.

My BIL was diagnosed with a brain lesion a few years ago which was causing seizures, he was on medical leave from work (he was employed by us prior to this, but this is another story) and we discovered that he was living in a flat in town but had gambled away his entire insurance payout and sold all his belongings and was sleeping on the floor. We uplifted him and placed him in a residential home / care environment where got a roof over his head and 3 meals a day at our expense. His health deteriorated and we took him to the doctor and the lesion had turned into a brain tumour (grade 4 aggressive, Im not sure of the pathology). He underwent a resection, they removed the tumour and he had chemo and radiation. He returned to the care facility but is now in frail care as he is not coping with normal day to day life. The tumour itself has caused brain damage and his cognitive function is impaired. His motor skills are getting worse and worse. He is struggling with bowel control. My DH speaks to him once a week on the phone and I get updates from the nurses at the facility. All his care, medical etc are paid for by us at a fairly large expense but we can afford it luckily.

My DH is struggling with the idea that his DBs life is effectively in his hands and he has to make decisions about his care and well-being. Obviously, if the relationship had been close and 'normal' then I think he would feel different. We (my DH) have to now decide whether we take my BIL in for follow up brain scans. We have been told that the tumour will likely reappear in the next few years after the surgery (its been a year now), he has had one follow up scan which was clear. We dont have all the medical info as we havent always been involved in his oncology appointments and have struggled to get doctors to communicate with us when the patient is an adult himself so the messages we have received have been mixed, ie some say they would operate again if it reappeared, others have said they wouldnt.

We have noticed in the last few phone calls and conversations with his carers that his condition seems to have gone downhill again. What do we do? Do we go back to his medical team and have scans so we know what is going on inside his brain? Do we leave it and let a very aggressive cancer take its course? His quality of life is pretty rubbish and I dont see it improving. We have had to tell the care home to not let him out anymore as he is catching taxis and ubers at his free will and its not safe outside of the facility for him My BIL wouldnt be able to understand this conversation if we tried to have it with him.

I feel like Ive left out a whole lot of details which make the question sound quite callous and uncaring. What do we do?

It sounds like you are in a really difficult spot, having to think about decisions without all the information. I think you need to liaise with his medical team, find out more info about prognosis and treatment options, get power of attorney sorted out, and have open discussions about what his future looks like, pallitive care at some point etc.

I don't understand why you wouldn't get the scans. You can only make decisions with all the info surely.

I don’t understand why you’ve decided you know what’s going on, without the scans? It’s clear you don’t like him, and mentions of his previous employment history are irrelevant. The fact of it is, your husband is responsible for him and he needs to be fully informed of all the circumstances before a decision can be made.

Because all the information we have had so far is that the cancer will return. Even if the doctors said they would operate again I am not sure that we would think it was a good idea. Even with his limited capacity I am not sure my BIL would go through it again. There is no way a further procedure would improve his quality of life. His physical health is poor and his mental capacity is already severely impaired.

Without sounding callous... What is the point of knowing?

Like I said. There are a lot of details which cannot be covered in a single post.

The relationship was severely strained and almost no contact prior to diagnosis. There are many people who would have done a whole lot less than my husband has done for someone who has been a pretty awful human being in his lifetime. I have tried to leave that out of my post because it would then become about me not liking him and not about what the right thing to do is.

Would it be fair to pass the decision making onto his young adult daughter who virtually has nothing to do with him because of previous abuse?

It’s clear you don’t like him and have decided that to you, his life has no value.

people with disabilities can live full and happy lives, and if I was in your shoes I’d be doing everything I could to make sure that happened. But you’ve made up your mind, so I don’t know why you’ve posted here?

I’d say that it’s important to establish who makes decisions over your BIL if he is incapable of making them for himself. In the UK, as the previous poster said, it’s called the Power of Attorney and given that you and DH are paying his bills and DH is his brother, that may very well be you two.

Is his daughter in the picture at all?

If this were me, I’d sort POA and then be led by his medical team - it sounds as if a palliative care pathway could very soon be needed if the tumour is aggressive.

Despite your BIL’s very erratic life (was he ever screened for autism?), his medical condition is very sad and you both clearly feel a duty of care over him.

Forgive me if I have misunderstood, but It sounds to me like you are saying that any further treatment will not improve his cognitive function or quality of life. If he is not currently in pain the issue seems to be that further operations will only delay the inevitable and if his quality of life is poor why would you want to prolong it? If that is correct then I don’t think you are being callous. It’s a tough situation be in.

Does the brother have an understanding of his medical situation in the moment when it is explained to him? What does he say at that point?

Morally I think you have to investigate and get the facts before reaching a decision on more treatment or not. Surgery is not the only option. There may be palliative chemo or radiotherapy to consider

Is there a legal system in your country whereby your DH can be declared his guardian/career and have access to medical info and make medical decisions on his behalf? That needs to happen first.

The speak to his Dr's, have the scan done and see where you go at that point.

Yes you need the scans, and yes your DH needs to attend all medical appointments with him so that he does understand what’s going on.

Thank you for a thoughtful response.

Im not really sure how POA would work here and if it is even worth considering. I would imagine that any decision making powers would fall on his next of kin, his daughter, but she has little to do with him. He really did himself no favours with his relationships while he was able to and he is unfortunately suffering now with the level of care he is getting from his family. Nonetheless, the decisions will be made by my DH as much as he would prefer not to be responsible for him.

Its funny you ask about autism. I fully suspect that he did fall on the spectrum somewhere. His mother had a hard time with him when he was growing up and she never really stopped caring for him (financially and mopping up his mess that he left wherever he went) even when he was an adult, after she passed that seemed to fall on my husband. We tried therapy, but he is a really combative personality and would not accept the help.

Anyway, here we are.

Yes, thats pretty much it.

Sorry - typed slow and missed extra info.

Clearly, this is a difficult situation given his behaviour and lifestyle prior to this diagnosis, and hats off to you both for stepping up. Many would have walked away, I’m sure.

In your shoes, I’d get the scans/tests and then liaise with him and his medical team to discuss the best possible outcome.

How much capacity does he have? Are you all on speaking terms? If he has capacity, then he must receive these tests as deciding the next course of treatment or care is anyone’s guess.

I’m guessing each scan is thousands of dollars unlike here in the U.K. where there is a treatment protocol and any necessary treatment including scans is free. It’s like weighing up the options as you would with a vet in the U.K. Hard for NHS users to picture so that is why I used the vet analogy.

Capacity is subjective I guess when you are dealing with someone who has effectively has a traumatic brain injury.

If you asked my BIL he would tell you that he could get a job tomorrow and earn millions and is being held against his will in a care home.

If you look at the reality, he cannot leave the care facility because he is safety concern. The left side of his body is pretty immobile. He thought it was Christmas last week Sunday.

There is just no way any further surgery would improve this. He was already in an induced coma for 6 weeks following the initial resection. He smoked his whole life so has compromised lungs.

For me (palliative care doctor) the key questions are:
Does BIL have capacity to make his own decisions about medical treatment now?
Is he actually fit enough to have any more treatment should it be on offer?

It sounds from your description that the answer to both these questions is No.

In which case, sadly, there is very little for your DH to have to decide on, as BIL will not be offered any further treatment or trips to hospital. All future decisions are going to be about keeping him comfortable during the end of his life.

If you are in the UK, you should get him assessed for Continuing Health Care funding for his care home. The care home should also have completed a DOLS to make sure they keep him safe.

This resonates a little with me in the sense that I have a sibling with similar traits and our dynamic sounds similar also.

God knows how I’d manage if I had to walk in your shoes.

But, nevertheless, you need as much knowledge of his prognosis as possible to be able to help him make an informed decision, or indeed make one for him.

I’d also reach out to his daughter to keep her informed.

I don’t envy your position OP. This sounds very tough.

Yes - There is a cost factor as well.

Its not like he can pay for his own healthcare. We cover the cost of everything. But money is not the issue here, we will continue to do what we need to do.

The cold hard truth is that if we hadnt stepped in, he wouldnt be here.

Besides for my DH being very angry that he is responsible for someones life again (he was in a similar position with his mother as his brother refused to step up and care), we need to know what the right thing to do is.

OP you’ve clearly made up your mind so why did you post?

Yes - we don’t consider this in the UK, do we?

This is not necessary and it’s unhelpful. If you truly can’t see the reason for her post, then you shouldn’t really make comments as unhelpful as this.

I think you can have the scans without progressing to surgery but that his medical team need to be involved as he may need palliative care medicine. He should be assessed as to whether he has capacity by someone independent of the family.

OP I think the scans will help your husband. He doesn't want to be responsible for the decisions, then pass them on. The medical team will say if there are no more treatment options available and that's taking the decision out of your husband's hands.

There may be other things they can do to alleviate symptoms or perhaps they can recommend more specialist care though. I wouldn't want to make that decision based on anything other medical evidence and advice.

She wants people to tell her she’s right to not seek further medical care for her brother in law.

Which she obviously isn’t. They need to seek care so that he can be appropriately treated. Whether that’s hospice or continued treatment, is for his doctors to say. But choosing not to do that is abhorrent.

I would get the scans and opinions from the oncologists, surgeons etc and go from there. I'd want to be fully informed and learn about what type of brain cancer it actually is before making such a big decision.

My son had cancer last year and is now disabled due to some complications.