Decision to make re DH's treatment

[Toorapid]

Thank you to those who have helped before, for others, I'll try to set it out so it makes sense without the history.

DH in hospital for over a month with cancer. We had a brief respite a few days ago when he was more lucid, but mostly he is confused and incoherent. Doctors have said he does not have capacity, although depending on when you catch him, he does seem to have some understanding of what's going on.

The cancer is terminal and he's in a lot of pain with a fracture in his back, caused by the cancer. I'm told pain relief is the main reason for the confusion, but there's also an infection.

3 weeks ago surgery for his back was considered. He was advised that it was a very risky operation because they'd have to stop his blood thinners and a clot could be fatal. At that time, he was mentally himself, they were hoping to help him with pain relief and physio and he was happy to take the advice not to go ahead. That hasn't been successful and they're now considering the op again. He's completely immobile, in a lot of pain and in a fog with the pain relief.

I've spoken to him today and he's furious that they'd even consider the op, based on the advice he had before, but it's not clear if he understands that the alternative is months of being bed bound, in pain and probably not able to return home or see anyone (no visitors in hospital) until the very end.

In his shoes, I think I'd want to take the risk for an improved quality of life for whatever time is left, but he's expressing such a strong opinion against it.

I should hear the outcome from the MDT meeting today. What do I do? Tell them no, it's absolutely not what he wants or go with the medical advice?

It's so hard trying to have these conversations with him on the phone, when he's laid on his back and mumbling between screaming in agony. I'm really unsure exactly what capacity he has.

Oh Op, that sounds awful. I'm not sure what I would do in such a difficult situation, but I just wanted to give your thread a gentle bump, and a handhold until somebody more knowledgeable comes along.

Have you been in contact with Macmillan at all? They provide support to families in these circumstances. If you believe he has been lucid on occasions you have spoken with him then this puts you in a very difficult position.

Could there be a chance that if the infection is treated that the confusion might improve as infections can cause confusion. Also, if they could reduce his pain relief for a window might he be more coherent then? It's usually inadvisable to operate on somebody who's refusing surgery, but if it would significantly improve the quality of his life and reduce the pain then it might be the better option.

The pain sounds horrific. Tbh if he's screaming in agony I'd probably sway more towards the op if it will give him relief. Such a tough situation to be in

Is there a nurse , perhaps the Macmillan one, who could liaise on your behalf and discuss the pros and cons in a more lucid moment. It sounds ver confusing and difficult to communicate otherwise. Do you have a power of attorney?

No, I don't have power of attorney, he was taken into hospital as an emergency, having previously been well, no visitors meant he couldn't get it done while he was in hospital and now he doesn't have capacity to give it, but it doesn't seem to matter, they're asking me anyway.

Op, what are they saying they can achieve with the operation? What is the plan? Is it to repair the fracture or remove some of the cancer? If he does have the operation, the cancer would still be in the spinal area causing problems I would guess. Are they trying to decompress the spinal cord?

Hi OP
We have talked before, hello.

I am wondering what the recovery time is and what the best case outcome would be. If it is that he can have some normal mobility, that would be a positive.

But if they say "best case is easier to get him moved from chair to bed" for example, then I'd think that might have a different influence on the decision.

Are they treating him as having no mental capacity to choose?

If you feel his decision making is not impaired, I would go with his choice.

What a tough choice.

Would the operation improve his quality of life? Would it reduce his pain or increase his mobility?

If the wins were realistic and achievable I would be tempted to give the go ahead.

Also, why was he saying no? If it is because - and forgive me - he doesn’t want to prolong his life, that needs to be factored in.

Will he/could he cooperate if he has the op to get the benefit? I'm thinking in terms of therapy like physio and feeding to build up strength. Undergoing an op is not in his best interest if he will need to engage in the aftermath but is unable to due to pain or lack of cognition or mobility. What are the risks compared to potential benefits.

Even if he lacks capacity they are required to take his wishes and feelings and yours into account.

I don't know if it would be a relief or not for you to know this but it's not your final decision. You just inform the Drs and nurses of his opinion (and they should consult him too) and your own and they will decide what is best taking all that into account.

You shouldn't feel pressured that you have to decide.

I don't know if that helps or makes it worse though feeling it's out of your control.

It seems a really big decision so maybe you could be invited to the MDT where they discuss it eg by videolink or phone. think that would be best practice

They should also try to maximise his capacity and maybe that can be done by reducing the pain relief for a time but it may be that would cause too much suffering.

I think if I was in your situation I would have to accept the opinion of the medical team that he didn't have capacity to make the decision because he can't weigh the options.

I would not want a loved one to die alone and in pain.

Does he have a palliative consultant? They're the best I think at these things, general oncologists can focus on treatment without looking at the bigger picture.

Have you been able to talk to the spinal surgeon who is doing the surgery? What do they think is the best outcome?

My m-I-l was in a similar situation (though without the severe pain) and it was very hard to get a full MDT appraisal of the pros and cons. And that was pre COVID.

Is there any option for him to move to hospice care? That way you can see him but he can have pain control overseen by nurses?

for you.

The operation won't prolong his life, it's aim would be to reduce pain and possibly allow some mobility, both of which would be a significant improvement to quality of life. It's to repair the fracture, rather than treat or remove the cancer.

TBh I'm really struggling to get any proper communication . I've only heard from the ward doctor, who was very short with me when I had questions she couldn't answer. I haven't been able to speak to either the oncologist, the surgeon or the palliative care consultant. Apparently I don't understand just how difficult things are for them all...

They were talking about a move to a hospice until this recent change to the plan, but visiting restrictions are exactly the same at the hospice.

@Toorapid

TBh I'm really struggling to get any proper communication . I've only heard from the ward doctor, who was very short with me when I had questions she couldn't answer. I haven't been able to speak to either the oncologist, the surgeon or the palliative care consultant. Apparently I don't understand just how difficult things are for them all...

When they call you - do they do that? - ask them what improved mobility means in reality.

Would you consider asking your local MP to intervene? Different hospitals have different rules for contact and this one is definitely being unnecessarily awful.

Can you go via his consultants secretary?

Where are his mets? Are they bone only?

I would go ahead with it. If it makes him more comfortable and he is expected to live some time it will make a difference

My late DH had bone mets and the pain was unbearable. An operation to help would have been wonderful

Also is he having bisphosphonates or bone strengtheners?

I'm sorry you're going through this, it sounds very difficult.
Have you considered contacting PALS in order to get better communication between the medics and yourself?

Ok you definitely need to speak to someone other than the ward doctor (who I may be presuming wrongly but is likely junior). I’d contact the secretaries and ask for either the consultant or the registrar to get back in contact as soon as. If the secretaries keep hassling them they will call and they usually can sit down and call then and there rather than on the ward where it is more difficult.

Are they looking to put rods in to stabilise his back or is this a metastatic spinal cord compression? If its the latter, there is usually an MSCC coordinator who I have found are extremely helpful and you could leave a message for her.

I wouldn’t discount the importance of moving from bed to chair as that is a significant and important ability. It means that you can go in a wheelchair for fresh air, its better for the chest and helps with maintaining ability to feed yourself.

It looks like they have done a capacity assessment in that he is unable to consistently recall the pros and cons of a procedure and use that info to weigh up a decision. It wont be that they don’t like his answer but more that he just doesn’t have capacity. They, however, should be making much more of an effort to speak to you and I’d say that lack of communication is a big issue. If the secretaries aren’t able to pin them down, I would 100% go via PALS who often have a lot more lout by being able to wrangle line managers etc into it.

I’m sorry that you are having to go through this

No advice but god bless you I'm so sorry for what your going through x

Hi Toorapid, I am sorry to hear of your huband and your situation.

You have mentioned in previous posts that a Macmillan nurse is involved. I would suggest that is your first port of call.They can liaise with all the consultants and advocate for your husband and you.
If I were in your shoes, I would ask about the disease in the spine - Key information to know is:
Is there a risk of spinal cord compression? Is there evidence of spinal instability?
Could the bone mets be treated with radiotherapy? ( Radiotherapy is often used to help with cancer pain) The problem comes when patients are admitted and treated on a surgical ward, oncology can sometimes offer a different perspective.
It is exhausting as a relative ( and I am on the other side as a cancer nurse specialist) and you need someone to advocate for both of you - don't be afraid to go to PALS and ask for help - it WILL get things moving more quickly xx

@Horsemad

I'm sorry you're going through this, it sounds very difficult. Have you considered contacting PALS in order to get better communication between the medics and yourself?

Yes, I contacted PALS yesterday morning. All they will say is they've passed it to the appropriate department and response time is 5 days.

I've left numerous messages for various secretaries over the last 3 weeks and not one has returned my call. They're all wfh so phones go straight to answer phone.

I'm trying very hard not to be a nuisance and alienate people but I'm sure my frustration is starting to show.

Thanks, I have more questions for when I do get to speak to someone.

Yes, bed to chair would be wonderful.