father with suspected cancer - what to do

[MereDintofPandiculation]

Nursing home rang today. Father, late 90s, has tested positive for Covid (5 weeks ago) but asymptomatic apart from fatigue. Has just had blood test results - his long-term anemia has worsened, and some of the bloods "suggest cancer". I have to decide how far they should investigate. My father doesn't have capacity for this decision.

The complicating factor is my father is adamant that he wants to live as long as possible, with every attempt made to save his life. So really I'm being asked "how much suffering do I want to inflict on him to prolong his life"

I'm going to talk to the doctor. I need to know what type of cancer could cause this anemia, what at his age they could do about it, what difference would investigating make to the treatment he would have. Anything else that it would be useful for me to ask?

Also, I'm wondering how many people to discuss this with. DH, of course, also adult DC. What about his best friend? Rest of family probably not - he has only nieces and nephews left.

Sorry to hear about your dear dad. Do you have poa for his health and welfare. Its not really fair to ask you to make a decision because ultimately its a medical decision. You can ask the dr what type of cancer it might be and what if any treatments are available. If it involves chemo or blood transfusions that would mean blood tests and going to hospital. If its not treatable then he needs to have a detailed plan in place so he is always comfortable. It may be a longstanding condition and he has reached a great age. Once you have more information I would tell his friend and extended family as they might like to visit him if they can.

Being realistic, a lot of this will be a medical decision rather than your decision, given the facts you have given so far.

If your dad is 90, lacks capacity for decisions -am guessing has dementia, and lives in a nursing level care home there will be a lot of limits on what is on offer to him.

He may 'want to live as long as possible' but for example it isn't realistic to give him CPR if his heart stopped beating and he died, as the chances he would survive are basically none.

They may also be limits on what sort of treatment he can put up with or agree to in hospital - having a bone marrow biopsy is deeply unpleasant to say the least and he may physically and mentally not be capable of it. Aggressive chemotherapy would kill a 90 year old in the best of health so it won't be on the table.

On the other hand some blood cancers don't really need any treatment bar monitoring - you need to have a chat with his GP and see what they think they have found, if it needs any treatment at all and take it from there.

Sorry to hear thisdint
I would want to know what the possibilities could be and what treatment options.... would talking to Macmillan be helpful at all?
Such a hard position to be in.
🌺🌺

Just seen your last question - who to discuss it with.

Obviously your DH as your emotional support person. Beyond that I'd wait until you have more information.

It may mean something or nothing. If nothing, well fine. If it means he is critically ill then his best friend may want the chance to catch up with him - am guessing virtual visits as his care home must be in lockdown, or at least know the score.

At the moment I'd wait as blood cancer can mean so many different possibilities.

I am sorry dint.

Your three questions are what I would ask.
From your posts you and your dad have a very warm relationship. Are you worried, even in his frail state, that he will think you are keeping info back from him?
Here’s hoping you can get in to see him soon if not then maybe ask close people to write letters for him.

That is letters/ face time messages from those denied visiting him that can be read or played to him by staff

Thanks, everyone, for your comments and suggestions.

@AnnaMagnani We're nowhere near treatment yet. What I've been asked is how far they should take attempts at diagnosis, in other words, should they try and find out whether it is something, or nothing. We already have a DNAR in place for the reasons you give. He has been diagnosed with mild cognitive impairment but not dementia. Nursing home do not regard him as having dementia, but do feel (and I agree) that he no longer has capacity for these sort of questions.

When I say "I have to decide" I mean I have been asked the question. Yes, I may be over-ridden but I have to give an answer, and of course that answer has to be as close as possible to what my father's wishes would be if he were in a state to answer.

On talking to people - I will speak to GP tomorrow with list of questions. Once I have those answers, I will talk to DC, I think they would want the opportunity to input into the answer. And I'd like to talk to his best friend in case my father has had conversations with him that he hasn't had with me. It won't come as a great shock because he already knows my father has tested positive for Covid.

@Rinsefirst No, I hadn't thought about worrying that he'd think I was keeping info back from him . I think if he did think that, it wouldn't worry him unduly - he's relied on me a lot for medical decisions, like "should I take this tablet they want to give me, or shall I refuse it?" which rather implies that he thinks I have more knowledge than he does.

I'm so sorry you've had this news

From a personal pov, I would say that if the medics feel your father is physically strong enough for whatever tests they have in mind then to go ahead and have them if he's on board.

As you know we're in a similar boat but were advised my dad is too weak for tests (he too started off with severe anaemia but a course of iron tablets has since sorted that).

It's incredibly hard not knowing what we're dealing with, and on a practical front it's limiting the kind of help/care we can access.

Goof luck with whatever you decide.

Minty That's a good point you make. Dad combines a desire to get all the treatment available with a naive belief that good pain control is available (probably because he's never had an operation in his life) and a very low tolerance of temporary discomfort. I think if I suggested he'd be up for a colonoscopy (which was one suggestion), I'd be over-ruled. In practical terms, even if we know what the problem is, because of his age and frailty a whole lot of treatments won't be available to him.

He's lucky compared with your dad as he's in a nursing home. So nurses available 24 hours a day, and all the necessary physical equipment. Just frustrating that I can't communicate with him directly at the moment.

Yeah this was the conversation we had with my dad back in November. They were willing to have him in for some kind of 'oscopy' at that point but made it clear there wouldn't be any treatment options besides palliative care, so dad went with the 'ignorance is bliss' option.

Sadly it certainly hasn't turned out that way.

Are you not able to speak to your dad even if you can't visit?

You need to find out a little more before trying to decide

Because to me, what you have written strongly suggests a blood cancer (though a GI cancer with occult bleeding might also be a possibility)

If it is a blood cancer, no operations are needed and the worst procedure is a bone marrow aspiration/bone biopsy which are normally done under local but can sometimes be done with sedation in more clinically frail patients

Some blood cancers can be treated very effectively with targeted inhibitor drugs. For others the regime may be more demanding (intensive chemo to stabilise, then maintenance)

But even if it is a totally different cancer which may be a bugger to treat, it is definitely worth finding out what it is. Because firstly it might not be a bugger after all, but even if it is then knowing what sort of bugger might affect palliative care options.

For patients to frail for internal examinations such as colonoscopy, the CT scan or MRI can be used instead. So with asking if they might be suitable alternatives if usual first-line investigations have excessive drawbacks

Are you not able to speak to your dad even if you can't visit? No, phone is desperate, his deafness is such now that I can't say much more to him than "yes" or "no". We haven't set up Zoom or Skype because I don't think he can cope, and he's lost his fine motor control so he can't write. Even if we do speak, he's too busy telling me about the procedures I must go through for secure communication with him. He's definitely more confused/paranoid than usual.

You need to find out a little more before trying to decide What I'm being asked is how much we're going to do to find out a little more.

But thanks for the comments, especially useful about the possible treatments.

They've arranged a chest X-ray and a stool sample to be going on with, and I've said he's OK for a scan, but probably not a colonoscopy. Another GP talk on Thursday. There is of course the possibility that the anaemia is another result of Covid - it seems to be presenting differently in care homes.

He wants to reach 100. He's only got a couple of years to go.

Oh bless you, deafness is a tricky one. My mum struggles even with hearing aids but is good with tech. My dad is the complete opposite but now has problems speaking so I sympathise I'd be in exactly the same boat.

What you've agreed to so far sounds sensible. Are they actually suggesting a colonoscopy or endoscopy might be doable?

Are they actually suggesting a colonoscopy or endoscopy might be doable? There's a suggestion that the hospital is unlikely to be willing to try a colonoscopy on someone of his age and frailty.

Yes that's what we've been told too.

I hope whatever path you take it's sorted as quickly and efficiently as possible. It's a ghastly situation to be in

Has the Care Home not set up any way of talking to him? I have done some virtual consultations with care home residents using care home iPads and at a push, staff mobile phones with Whatsapp video. The residents don't need to do anything just look at the screen with the staff member.

Given you aren't just calling to talk about the weather or what his grandkids did at school today, you would hope the care home manager could sort something for you.

My grandad had a colonoscopy at that age , they removed cancerous polyps , he demanded it and he went on to live until he was 102. Obviously anything bigger else would have been impossible .

My grandad had a colonoscopy at that age What was his physical state like? How frail was he? And his mental state and level of understanding?

AnnaI haven't asked the home to set anything up. Communication has been getting harder and harder - even face to face he can't hear most of what I say (while refusing and suggestion he may be going deaf), so I don't think even an iPad would help.