Is palliative care the right thing to ask for?

[Alainlechat]

Hello, I’m slightly at my wits end knowing how to get support for my elderly dad who has multiple health issues including advanced cancer, mild dementia, on blood thinners and is incontinent for urine.

After a hospital stay he had enablement care and was signed off as needing help with his medication only a few weeks ago. A pill dispenser was put in place.

I tried to get a care needs assessment done by the council but still waiting. They were reluctant as he had been signed off as having no care needs.

I have called the doctor out to him who said he wasn’t concerned and tested him for a water infection only.

I spoke to the oncology nurse that had been assigned to him to see if palliative care was an option but when they spoke to him they said they could not do a referral as he didn’t meet the criteria.

I believe my dad is really poorly and I don’t know what is normal. He is in bed most of the time snoozing and sleeping . Can go to the bathroom but doesn’t manage well and users incontinence pull ups.

He was living off a bowl of cereal and a banana at best but didn’t eat for the last 3 days. He did eat some porridge yesterday.

I go round each day and do anything that needs to be done but not personal care. I also work full time with a 3 hour commute on the days I am in the office so can’t be around quickly if needed.

I don’t have LPOA so can’t take over anything officially.

Dad lives alone, is 83, refused an elderly alarm. I spoke to the doctor this week as dad had explosive diarrhoea and had blood in his urine again. The doctor said I should call the oncology nurse again next week and that a home visit will be arranged by the doctor next week.

The hospital is calling to have a pre op assessment for his next cancer treatment but I can’t get him into his kitchen or living room let alone to the hospital.

I feel he should have palliative care or be in a hospice but I don’t know if I am over or under reacting. Does anyone have any advice.

Agree. If in pain and vomiting he needs review - it may be that pall care input is now appropriate.

At least by calling 111 for an out of hours review he can have pain and anti sickness medication,

Do you go to medical appointments with him? Can you be on hand to correct him when he says everything is fine?

Re pain and sickness. Is this linked to his cancer? Do you know what instructions he’s been given by the oncologist or what to expect?

Id push for a district nurse to do a blood test. See what's causing some of these symptoms. For example, if your kinldney and liver function are up the spout, it can make you sleep, not it, confused etc.
He may have something going on different to the cancer, in which case oncology won't be able to help.
Speak to the GP and get an appointment and keep pushing till you get help. You can get free care under certain circumstances so make sure you research what he is entitled to.
Hope you get to he right help

The cancer they suspect he has but won’t investigate is cancer of the ureter. This can cause extreme fatigue and blood in the urine as he has. This looks to have a poor prognosis but as it’s not been checked we don’t know what my dad is facing.

I did attend my dads oncology appointment so I heard first hand what they said.

Dad was only sick initially and fortunately held the rest of the fluid down. I will mention this to his GP.

He needs a care package if he’s staying at home for now. You can refer him to Social Services yourself for assessment and make sure to tell
them the whole situation. Don’t minimise. He probably won’t need to pay, if he’s so ill.
If he’s not ill enough to receive free care, he will not need to pay if he has less than about £23500 in savings.
And he needs a GP visit for symptom control. GP may refer to the District Nurses for an overview for pressure relieving equipment, continence care etc

He can refuse a care assessment, maybe the carer who helps with his medication can report his decline to their manager or GP.

Dad was admitted to hospital after a fall. He was found on the floor and had been vomiting brown liquid. He was taken to A&E and admitted after it showed blockages in his bladder impacting kidney function. He is also hallucinating.

No one could believe he had been signed off as needing no care or palliative care. It now states terminal cancer on his notes.

No doubt he will be discharged in a few days but at least he is well looked after now and gives us a chance to get the right care in place for him now.

Hello, I'm so sorry you are going through this. You are me, just a few months ago. Please, please do not let them send him home without a complete package of care. Go to the hospital, and refuse his discharge with the ward sister. If the care package isn't sufficient, make a fuss, call his social worker daily, if you haven't got a social worker call the emergency team daily. The sad fact is unless you create as much fuss as possible there will be little offered. My Dad was given respite care, he deteriorated rapidly whilst on respite care and never came home. I absolutely had to advocate for him every single day with one thing or another and yet I still don't feel I did enough. I have no doubt people were sick of me, but ultimately, my Dads comfort and dignity was all I cared about. I'm sorry to say, life took a back seat, as the constant phone calls, assessments, appointments took over entirely for that period. Again though, I wouldn't go back and change any of that. I just wish it wasn't so hard for those of us in such an awful position. Sending you strength.

Sorry to hear this, if they do talk about discharge he needs full care, speak with the staff and do not let him go home without a care package, ask about fast track funding. Send you best wishes

My understanding is that once the terminal diagnosis has been given, he should be placed on a palliative care pathway and costs of care should be covered by continuing care. As others have said, push as hard as possible to get the care scenario that works best for him.

This is slightly second hand experience as my mum has been dealing with most of it for my grandmother but once the doctors said they couldn’t do anything clinically (other than help her be comfortable) everything clicked in very quickly (hospital bed at home, additional carers, pain meds etc).

It’s awful it’s taken so long for you to get help though.

This is what happened with my Mum (eventually, after a lot of faffing and argument about unsafe discharges). In England it's Continuing Health Care, not sure if Scotland is the same but I would guess so, it being the land of free prescriptions etc.

Your experience is unfortunately not unusual @Alainlechat care of our elderly can be shockingly inadequate.

Ask for an immediate referral (from ward sister or Dr.) to the hospital palliative care team

Contact PALS at his hospital

Within the hospital there is both a hospital social work and a ward discharge team, contact them too.

You have options @Alainlechat, you will have to strongly advocate for your Dad, especially as he is minimising his needs (sadly, too common with our elderly folk)

Your Dad cannot be legally discharged from an NHS hospital after a fall without a Health and Care Needs Assessment.

Wishing you both, very best wishes.

Ask for a referral to the frailty team.

Everything seems to have kicked in now dad is at hospital. We have the frailty team involved, a dietician, and a referral to the memory clinic.

They have on record that my referral for palliative care was refused on the basis that dad said he was ok which is what triggered the referral to the memory clinic as clearly he is not ok.

I'm sorry to hear about your Dad, as others have mentioned do not take him home without a care package, you're within your rights to refuse.
My mum is in hospital at the moment I have been caring for her in her own home for months. The social worker is trying for respite care in a nursing home for her, the trust will fund 6 weeks (I'm in NI). She will be staying in hospital until they find one.

Be wary of taking him home even with a care package. They will promise the earth to get the bed back, help which is often disjointed, inadequate and very often even non existent. You will be very heavily relied upon to prop up the situation 24/7 as he deteriorates. Be warned.
I suspect he’s been saving for ‘a rainy day’. It’s now pouring down. What is he doing with his AA?
As an ex district nurse of many years I would never choose to die at home.