Please help - DM, cancer with extensive liver mets, pain/sickness

[stressedstressed]

Hoping someone can help me to get the correct care that DM needs.

My DM was admitted to hospital a couple of days ago. She had breast cancer, which went to her bones and now to her liver. She has several liver mets, which are quite new but are very clearly going to cause her death within the next few weeks. Her liver bloods are off because of the mets, she has had extreme and constant nausea and vomiting and has been unable to keep any food down whatsoever. Weight has fallen off her, she was suffering every minute of the day with pain and nausea. She is in a very very bad state.

We managed to get her admitted to hospital a few days ago and a great oncologist has seen her, got her stable on a syringe driver/IV meds of morphine and a couple of different anti sickness meds. This has enabled her to eat a little bit and to be able to have a conversation and to be alert, walk to the toilet etc. She is in "fantastic" shape with these meds. We agreed with the oncologist on discharge in a few days with the syringe driver to keep her symptoms controlled so she could basically die in the manner of sleeping more and more, rather than suffering.

A different oncologist has just seen her in hospital and wants to take away her syringe driver. I am stressed and angry about this. They now just want to give her oral pills for the sickness and pain - which is not going to cut it. She has had loads of gastro issues from prior cancer meds and the liver mets are obviously destroying her gastro system. I am concerned that the new oncologist made this decision totally against our agreement with the previous one and to save money.

I want to know how to access proper palliative care/hospice at home (as I will go look after her every day, I just obviously can't do the syringe driver). Please can anyone help me. My DM was not suffering with the proper IV/syringe stuff, there is no need for her to suffer and I don't want her care downgraded to pills she can't manage to tolerate, that have side effects and that are just not as effective as the treatment we agreed on - yesterday! I want her not to suffer.

Any help appreciated.

Can you ask for the hospital pain management team to see her?

That's terrible.

Refuse discharge until she can go to a hospice. Say you cannot cope with her at home until her pain and sickness is appropriately under control and if they cannot do it then the hospice can.

Once there they should be able to help.
You could also refuse discharge until she sees yesterday's consultant.

Warning though - this happened to my mum and the hospice had no staff over Christmas so although it was nicer she wasnt really treated better. The hospice appeared great but there were some fundamental failings in her care. (Like being told she had to be discharged because she wasn't dying fast enough)

Omg
your poor mum and you

thanks all for the info

I had a similar issue with painrelief for dying DH. He'd been OK with pain managed at home, but when he was admitted to hospital the ward basically refused to believe the dose was right.

This was during covid and I couldn't go to the hospital, so in desperation I called McMillian and they sent two of their nurses (based at the hospital) to go and sort the ward out.

Was the syringe driver set up by the Hospital Palliative Care Team rather than the Oncologist?

Basically that is who she needs to see and who should be making the final decision about the syringe driver.

In this situation I would suggest going home with the syringe driver and a reassessment at home by the Community Specialist Palliative Care Team. Being at home is completely different to being in hospital so you can only really assess when she is at home.

Am a specialist Palliative Medicine doctor.

Thanks - I’m pretty sure it was consultant oncologist who requested the driver - I don’t think we had seen anyone from palliative care at that point because it was during that same conversation that we were told of the liver mets. The liver mets had discovered on a in patient scan due to the major debilitating sickness/inability to eat which caused her admission - having previously been on active cancer treatment only 8 wks ago

we are in a major regional oncology unit so there are loads of different docs in here

i will push for her to come home with the syringe driver, thank you

If you are in the UK on an oncology ward then there is definitely a Palliative Care Team. You may have seen them but honestly you see so many people.

As your DM is so poorly there isn't really a benefit to her of coming off it and a lot of benefit to staying on, not least that the district nurses will have to see her every day

Communication is a bugger - essentially the way is to ring and visit and nag incessantly until you have arranged to speak to the doctor, then take a day or two off work to do so and glue yourself to the patient's bed, armed with an air of reason, endless patience, and a notebook.
"Talk me through why... Because what our experience has been is..." Is a useful phrase.

Hospital is a terrible game of whispers and IME you can never be sure quite what the facts are until you've been through your own personal detective episode :/

I had good experiences with the palliative care team when Mum was dying fwiw.

And don't be afraid to say "no, this is not in my mums best interests" and "we do not consent to this treatment plan. I'm so sorry but I want someone else to consult on this as well, because I don't think it's good enough. It's not personal but I'm advocating for my mother"

It's OK to be awkward. It's OK to say no. It's OK to demand to see the next person up in the hierarchy, several times over and it's OK to go to PALS when you feel you aren't being heard.

Put things in writing to PALS the second you need to and refuse discharge if things start getting hairy. My dad died last month and I fought to get him the right treatment. I don't regret a second of it and the nurses on the wards understand. Doctors, not all of them so much, especially those who hadn't had much contact with us.

Call your local hospice directly and ask them if they provide hospice at home care. You Mum will
come home but the hospice nurses can come and do things like the syringe driver. She might need to go to the hospice first to see their Dr and get a plan in place before being discharged home.

@DaniAlvez Unfortunately Hospice at Home means completely different things in different areas. And usually doesn't mean Hospice nurses doing the syringe driver- it's almost always District nurses. A large regional centre will have its own Palliative Medicine consultants and specialist nurses to see inpatients and make sure their discharge home is safe.

As OP's mum is in hospital, it's the treating team she needs to speak to:
Mum wants the driver to stay
She needs referral to the Community Specialist Palliative Care Team- sometimes linked to a hospice but just as often not

Refuse to leave unless she has the syringe driver. Patients can go home with it and they can send nurses to change the driver, we had this plus oxygen at home. Ask to speak to the pain team and the palliative team.xx

I’m a nurse and please please ask for a palliative care review! In my trust the palliative care nurses will review any palliative patient if we or relatives have any concerns. They often tell our doctors when syringe driver prescriptions need changing and I’m sure if you voice your concerns, they will definitely agree that comfort needs to be the priority. You’re right, oral antiemetics aren’t always appropriate with chronic nausea because of the patient vomits them back up before they’ve taken effect then you can’t give for another few hours.

its also worth looking into Martha’s rule, a lot of trusts are adopting it where you can ask for a second opinion. If you take a read, you can definitely ask for another opinion under Martha’s rule. Although she’s palliative, under Martha’s rule, your concerns must be listened to and responded to. https://www.england.nhs.uk/patient-safety/marthas-rule/

I really hope you get some joy op, I’m really passionate about comfort in end of life care and the priority should always be making a persons journey comfortable and not compromising their dignity. 💖