[Closed] "Not Bothering" to diagnose illness - Negligent? Pragmatic?

Having a conversation along the lines of what you just posted would seem a sensible starting point. Don't start by implying they are negligent though.

Not that I'm an expert, but palliative care for cancer seems to (at least in some cases) take the form of nasty chemicals that make the patient very ill for a small increase in life expectancy. If they aren't strong to start with it might well be a poor option.

Recent experience with my MIL and our elderly neighbours has shown us that elderly folk easily get badly malnourished and dehydrated. Our neighbours now have carers coming in at least twice a day to cook them decent meals and the transformation has been amazing, both are brighter, with better colour, less depressed and actually enjoying life again.

Complex issue, probably best discussed with medical professionals in question rather than a bunch of IT consultants on the internet.

Just to give what may be the doctors' perspective - even if they had a diagnosis, the effective treatment for best quality of life may be little different. Meanwhile the diagnosis involves invasive actions which would definitely have a negative affect on quality of life.

Though I agree with others that you need to have a proper conversation with real medical professionals - a proper non-confrontative conversation. Even a medical professional on here would be no more than guessing.

I think that the misery of having a biopsy isn't worth it since the treatment would be unlikely to be worthwhile and if it did wouldn't buy him decades of active life IYSWIM.

Your FIL may feel different.

Even something like a biopsy carries a significant risk. A friend (50ish and relatively healthy) almost died recently after infection and septicemia from one. I think sometimes doctors can be negligent in explaining their decisions, IMO, best thing to do would be arrange a suitable time to speak to them.

Does F-I-L have mental capacity?
If so medics can and should talk to him about what to do. Patients often decline investigation if given enough info. Eg it might be cancer but if it is we wouldn’t be able to operate. No one else’s business.
If he doesn’t have capacity then there should be some sort of best interests discussion and family should be involved (but don’t necessarily have the right to overrule the decisions of the medics if the decisions are in best interests of patient.)
It’s not negligent. Test of negligence is bolam principle. If a group of peers would have done the same then not negligent. It’s actually good medicine to recognise terminal illness and plan for death rather than over treat people pointlessly. We need to do it more not less
Poor communication maybe an issue here. Hospital docs or GPs?
Palliative care can be given regardless of the cause and we often don’t have a tissue diagnosis.
Palliative Care is certainly not about nasty chemicals. It’s all about treating symptoms and relieving symptoms when someone is dying. Occasionally “palliative chemotherapy” is discussed but that won’t happen here as no tissue diagnosis.

I am always looking for an excuse to share this... https://www.theguardian.com/commentisfree/2017/sep/12/cancer-common-marriage-wake-up-call-macmillan

Thanks for your responses...

My post wasn't pending or in lieu of any antagonistic conversation with the docs.

My own father passed away with cancer earlier this year. He was older and in worse condition than FIL, but as a terminal cancer patient was sent home for his final few weeks with all the kit, care and support (medical & financial) that he needed.

By contrast, FIL has been sent home with a shrug of the shoulders, no support, no palliative care plan and a view that if you need support - get yer money out!

Doesn't seem right to me, especially if they both end up being taken by cancer.
We DO NOT WANT a biopsy, he is way too frail... but surely there must be other indicators that would give an idea one way or the other???

I suspect the answer then is that without a biopsy they can't do a proper diagnosis, and if he's too weak for that he's too weak for any care other than palliative, which would be largely the same whatever the diagnosis. But I'm still guessing and I don't even pretend to be a doctor on TV.

I think other tests would be in support of doing a biopsy as the determinative test, and do not provide a conclusive result in reverse. Best wishes to you, rkk.

If not cancer and If it was fluid, it could be treated with a chest drain and then maybe with talc to stop it from happening again.
So they could not be treating something that is treatable.

That’s if it is fluid,

Or they could be of the opinion he's too frail and unless it's immediately life threatening, it's not worth the risk.

We've been going through this recently and you have my sympathy. We have a situation now where the main focus is pain management and morphine, sometimes there's just nothing that can easily be done. Sadly, people just get really old, really frail and that's it.

From my personal perspective, it's heartbreakingly hard to accept and deal with, but what's the options, i can't just fall apart.

But if the condition is the cause of the frailty. And you are only going to get weaker?

Mrs rkk01 has headed over today in order to be around for a home GP visit - in the hope that they're a little better on the patient / family communications stuff.

I have sympathy with the op and I am not suggesting his FIL is not getting the care he deserves.

But I have seen first hand how the elderly are too quickly written off by doctors

Your family may need to push for an answer or a better scan. We went through the same with my FIL. History of COPD (heavy smoker) but started to lose weight over 6 months. We got him to agree to a checkup and scans revealed shadows. Further tests (no biopsy) and it was Stage 4 and close to the main windpipe.

Options were chemo but he was very frail and the treatment would possibly kill him. He deteriorated quickly but and was 'too ill' to be admitted. Social services helped out with a hospital bed for the back room. Unfortunately MIL is disabled (stroke) so we had to arrange extra carers. We were also lucky to find an organisation that would do overnight care as we were all working. They kept an eye on him for about 3 weeks until he died.

If someone is too frail there isn't much you can do, but please do engage with social services and your GP to see what home care can be acquired, as it's hard caring for a dying relative at home.

But if the condition is the cause of the frailty. And you are only going to get weaker?

Well not having examined the patient nor having any medical training, I'll take the radical position of deferring to the medical professionals expertise...

Once you're really old and frail, it's just a matter of what finally kills you, it doesn't really matter what...

weeksy - we saw this with my Dad over the summer...

As a family we know what to expect, although the "when" is an imponderable. It's the "how" we can't figure - and why the "how" can be so different.

We were also lucky to find an organisation that would do overnight care as we were all working. They kept an eye on him for about 3 weeks until he died.

At the risk of being brutal, is the passing of a loved one not worthy of taking time off.
Was your father in law aware he was spending his dying days in the company of strangers rather than loved ones

Once you're really old and frail, it's just a matter of what finally kills you, it doesn't really matter what...

Sorry, but this is the attitude that we are pushing against... It really does matter. Watching my father die from cancer was pretty shit. The only positive was that he was able to come home, have family around and have the right medical support in place...

Once the cancer had crumbled his hip bones, any movement was agony - daily nurse visits and the morphine driver were essential.

"You've had it anyway - go home and wait" is not an acceptable answer in a civilised society.

We were taking time off, but it was overnight care as well for probably two months before things got very difficult, and that's when the organisation helped out - he ideally should have been in hospital, but an ambulance crew wouldn't take him as he was too ill. Also there are many employers who won't let you take lots of time off for a dying relative.

And this is about the OP's situation. If the person is too frail, there isn't a lot to do other than keeping them comfortable, so getting help sorted out now can be useful.

We had quite a bit of family crap going on, on sister didn't want her dad having the morphine (very low dose) but it had to be spelled out to her that it stops people getting frustrated (I know as I was on buckets of the stuff when I broke my spine).

Sorry, but this is the attitude that we are pushing against... It really does matter.

But, without a discussion with the medical professionals about his lungs, you don't know what the options are, so it's all just supposition.

It’s perfectly possible to give excellent end of life care without a definitive diagnosis.
The hard part is recognising when someone is dying.
Concentrate on the symptoms. Breathlessness, pain, etc. All can be alleviated without necessarily having a firm diagnosis.
Any input from Macmillan nurses? They are the people I turn to in situations like this.

Sometimes towards the end of life its simply not worth finding these things out for sure. Testing is unpleasant and invasive in some cases and if there would be no treatment that was not futile then why bother finding out? It will make no difference to the outcome

My grandad had a shitload of things that, given long enough, would have killed him, and no real likelihood of living long enough for any of them to actually do it. Treating him for the lung cancer alone would have pretty much been an exercise in ruining the time he had left. It sounds like it may be something similar here?

why bother finding out? It will make no difference to the outcome

FFS...! Because we want him to be comfortable and have whatever medical / other support that is appropriate - including suitable pain medication... and that seems to depend on what they think is wrong with you

At the mo it's difficult to get anything stronger than paracetamol.

And getting the right medical treatment does not mean you need to send him for invasive and futile tests. If he would not be a candidate for surgery or chemo then there is no need to find out for sure if he has lung cancer. treatment would consist of symptom relief only

I think you need to talk to some of the medical professionals involved

It just sounds to me as if no-one has had a proper conversation with your family about what the options are, and why the 'do nothing' approach may or may not be the right one.

With your FIL's consent, the best thing is to arrange another appointment with the consultant involved, attend with him, prepare some questions and take notes. At the end make sure there the opportunity to ask any follow-up questions.

You basically need to know if he is in a palliative care situation, or whether they is some other kind of plan for his care.

including suitable pain medication... and that seems to depend on what they think is wrong with you