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.

Contact crisis team at social services - it sounds like you need a social care package at the least- help to get up, wash,dress, eat,meds etc.
but he'd need to agree to agree to it - why did he refuse the alarm?
Palliative care in a hospice isn't a replacement for a nursing / care home / care package.
It IS to manage the symptoms of his terminal illnesses though- could gp refer to local community hospice nurses who could visit him at home?

Do you not have PoA because your DF is refusing to do one or just because you've not approached him about it yet? If it's the latter, can I suggest you do so asap? If it's the former, can you not try to talk to him about the advantages it will bring to giving you a relatively hassle-free route to helping him, if not now, at least in the future? I'd also echo the sentiment that you need to contact the crisis team to get a social care package in place. He's not coping.

He is too weak to get up. He had to eat in bed yesterday. His bathroom is just a few steps away so he manages that. He refused the care alarm due to the monthly cost and refused to wear it so I sent it back.

Ideally he wants to stay at home with his elderly dog. Visits from hospice nurses could be a good option.

He has asked me to get LPOA now but he is a recluse who has no one to sign it for him so I’m hoping the social worker can do that when we get one. Honestly given the length of time they take to come through I don’t even think we have enough time.

Even if I have LPOA he can still refuse things while he has capacity though? When the oncology nurse called him he said he wasn’t exhausted and he had a reasonable appetite!

I’ll look at getting the crisis team involved. I feel like everyone thinks nothing is needed between the renablement team, the doctor and the oncology nurse. Even the council seemed reluctant to do a care needs assessment as the renablement team had said nothing was needed.

Contact the adult social services team and request an assessment. Depending on his financial situation, he may have to pay for any carers

I can tell you what I did in similar circumstances. Some of it might help, even to know what others do. But I’m in Scotland so some of it might be different.

I phoned social services and put in an adult safeguarding concern. I listed all the reasons I thought he was unsafe (unable to reliably summon help, unable to get himself out of the house in case of fire, unable to independently prepare food etc). This got an assessment the next day. Assessment determined carers were needed. Dad didn’t have to pay for carers because he had a terminal diagnosis. This might be different in England.

I requested a care needs assessment shortly after the renablement team stopped. That was just over two weeks ago. They signed him off as not needing help apart from with medication. Left a pill dispenser with him that has an alarm but left it unlocked so when I got round there the next day he was in a total muddle with it.

I asked them if they had referred him to the social care team but they said no as nothing was needed. This is all new to me and I don’t want to persuade my dad to part with his money if it’s not needed. I don’t know what the standards are but I just see my dad really poorly.

Sadly palliative care services are so stretched that they often will only get involved if a person is end of life (within days/short weeks of dying) or has difficult symptoms due to their illness. So different to when I first started working in cancer services 20 years ago - back then we were encouraged to refer everyone with a terminal diagnosis, even if they were well and only just starting treatment. The PC nurse would make contact, signpost their services (psychological support/reflexology/group sessions etc) and say let me know if/as/when you need anything. Now we have very frail patients being discharged because they are not palliative enough. Most hospices are funded by charity. The hospice my step dad went to had several empty beds because there wasn't the staff to open them. It's simply not good enough . The NHS is is paying for cancer treatments that cost £500k per patient, but then provides abysmal EOLC. We need to do better and properly fund palliative care. Rant over.

It sounds like your dad does needs more support but social services and community nursing may be more appropriate at this point.

Thank you. My dad does not have a teminal diagnosis but I don’t know how he can get one if he is too poorly to get to hospital. He does have suspected stage 4 cancer with mets but as they said he is too poorly for chemo and other surgery there was no point putting him through the procedures to determine the diagnosis.

I think that would qualify as a terminal diagnosis Alain. He wouldn't need to have a biopsy for the team to be able to sign any paperwork.

Does he have a helpful GP OP?
It is tricky if your dad has mental capacity and is declining support.

Can you phone his GP and ask for a home visit for a meeting about his care plan. GP should come to the house if he is housebound. The GP is the gateway to a lot of help from other services.

However there is no getting away from the fact that your dad will almost certainly have to pay for his care, whether that is carers at home or a nursing home. If he doesn’t have enough money to pay then that’s different.

I spoke to the GP and they sent a paramedic round who called me to say they did not have too many concerns other than to check for a water infection. I did call again at the end of last week due to the recurrence of blood in dad’s urine. The doctor said to call the oncology team to report it but that there would be a home visit next week.

I did look into a private care company that would have cost around £1800 a month for two short daily visits. Dad wasn’t happy with that and of course is hearing from enablement that no care was needed. I can’t sign up to that without dad’s agreement so I wanted the care needs assessment to give an unbiased opinion.

Is it possible that your DF is telling fibs to anyone who visits to do an assessment?
My DM used to do this, and I couldn't understand their responses to me. After that, I made sure either my sister or I were there for any home visits or GP appointments.

I suspect that when the medical/care teams speak to your dad, he says he does not need any help, so he doesn't get any. When SS do a needs assessment, help they cannot provide help unless he agrees. As the PP says, you need to be there at these meetings or nothing will happen.

The help SS would provide would be carers 4x a day to get him up and dressed, change his inco pads, provide a meal. If he has more than £23k in savings he would be expected to pay for this.

You are right that if he still has capacity, you having health & welfare LPA will make no difference as he can still make his own decisions.

Hospice care tends to be available for the last two weeks of life, and sometimes there isn't a bed available so you can't depend on it. My friend had cancer and she had Hospice at Home, where they came in 3 or 4 times a day to keep her comfortable and give her meds, but that was not enough on its own, she still had family staying with her too for the last six weeks of her life.

I would say almost certainly. He told the oncology nurse that he was not exhausted and eating reasonably well. So she couldn’t make the referral for palliative care on that basis.

I remember my mum when she had a few weeks to live and she seemed in a better way than my dad does now. I do think he only has at most a couple of months, he just looks so poorly in his bed 😥.

Complicated, there’s a lot going on.

you mention pre-op assessment - is his cancer still being actively treated at 83? What’s his prognosis if it’s not considered terminal?

If your dad is more or less able to look after himself at home - and it sounds like he has been up until now, even if it’s just eating cereal in bed and pulling up his own pants - and he keeps telling social / medical services that he’s fine and doesn’t need more help then you are going to get nowhere. Doubly so if you keep popping in and propping him up. From their pov he’s doing ok and his daughter is providing care as needed. Medically - cancer aside - he’s ok. He’s got capacity and is allowed to make poor decisions.

What do you want to happen? the usual first option is carer visits to help with personal care. This includes getting up, dressed, washed, toilet visits, eating and drinking, taking meds etc. If you think he can’t manage these, then write it all down, exactly what he can’t do and why it’s a problem.

But if he is refusing to say he needs help, and if he has assets to pay for care, if he has capacity to decide and a daughter helping out - you aren’t going to get anywhere asking for free care.

It does sound like his needs come under social care not medical or palliative currently, but if he is deemed to have mental capacity he can decline help. What is his financial situation? This may make a difference though you can get a respite care package if he qualifies for a limited time. Who is caring for his dog if he can’t get about? Do call adult social services again to escalate though. It’s very difficult for you and so many others in these situations because their parents are often refusing help and underplaying difficulties. Getting the finance Lpa is really important though so you can both manage his finances but crucially see what he has, his home won’t count if he’s resident in it but other savings

I did think that hospice and palliative care existed for those with less than 6 months to live. I’d love someone to tell me my dad has more than that but he is exhausted and wasting away in front of my eyes.

They will try to manage the cancer in the bladder but are not investigating the suspected mets up the tube leading to the kidney as he is too unwell for any treatment for that.

I will see what this week brings with the doctor visit and try to persuade my dad to accept some personal care. I do worry about his skin from the urine incontinence. He fell out of bed twice just before the renablement team left, once I was already there and once the carer found him and called an ambulance. He refused to go to hospital.

He has always been careful with money hence refusing the care alarm, he was also not happy when he had to start paying for the incontinence pull ups as he’d been given them free in the hospital.

See if your GP can refer him to the Community Matron, if there is one in your area, as he/she is able to put a lot of things in place, coordinate, and put pressure on agencies that are dragging their feet. We had one when my husband was terminal, and she was able, not only to put things in place for him, but to persuade him that they were needed, which I hadn't been able to do.

For pads the GP or nurse should make a referral ro the continence nurse, he shouldn't have to pay but they wont offer pull ups. , the council,also offer a disposal service. Is he having any carer at all? Did the reablement team visit the house, set up a hospital,style bed, commode, adaptations or equipment? I'd ask the doctor for a likely prognosis as he may be eligible for fast track funding. If he refuses an assessment you're a bit stuck, if he has capacity he can still make his own decision, keep pushing the GP for a home visit. You can call macmillan or the palliative care team at the hospital for some advice.

I completely agree with @Mixymaxymoxy but just an aside, have you made a claim for attendance allowance? It is not means tested and can be used to pay for the care alarm for example.

https://www.gov.uk/attendance-allowance

Thank you all for your help and advice. Just to clear up the dog is well cared for. He is also elderly and has access to a large garden via the cat flap and we are popping in every day too. It’s only these last few weeks that dad has really become more poorly.

Thinking back up until a month ago he was watching a film in his living room, heating up a ready meal so was probably doing better. His capability has massively reduced in the month or so along with his energy and appetite.

He does claim the lower rate attendance allowance.

Just visiting now. After eating nothing for 3 days dad ate some cereal and a banana within the last 24 hours. He was able to get up to eat the banana. He asked for a painkiller and a cup of tea which I gave him and he threw it up and has gone back to laying down on the bed, I had managed to pull him to sit upright to take the tablet. He has managed to change two pull up pads but there is a towel on the bed where he says he spilled water. I’m not able to get him out of the bed to change it.

He is just really ill and deteriorating.

If eating and drinking is making him vomit he must feel very weak, he sounds very poorly and he is getting weaker, I'd call 111, they can ask a doctor to come and assess him, he can't be left just lying in pain in bed.