End of life care

[Twentynone21]

Hi there, would be really grateful for some opinions.

I have a DAunt in her 60s who was sadly diagnosed with a glioblastoma brain tumour about 4 weeks ago after being taken to hospital by ambulance. I am her only family.

DAunt has struggled with some health issues over the years and has been known to be a bit of a hypochondriac and unfortunately it looks as though the brain tumour symptoms were missed during lockdown. DAunt was originally treated in a hospital specialising in the treatment of brain tumours but because she has only been offered palliative care & transfer to a hospice she was transferred back to her local hospital, which does not have a very good reputation.

Communication and care in the specialist hospital was excellent. Communication and care in the local hospital has been lacking and at one point they suggested they were going to discharge my DAunt with some OT equipment despite her living alone and being unable to speak or walk unaided. I managed to stop this as this previously happened at this hospital about 6 wks ago and I ended up calling the ambulance for my DAunt which resulted in her current admission,

I am concerned about the following points and would be grateful if anyone could give me their perspective.

DAunt was transferred to the current hospital 7 days ago and on the second night fell out of bed. The bed rails still haven’t been put up on her bed,

DAunt is usually very talkative and tried to communicate when in the previous hospital but this has declined over the last 7 days and I am now only getting yes or no answers, sometimes.

DAunt cannot reach out for her water, how is she drinking when I am not there?

DAunt had a urine bag in place today, the urine was very dark brown and the staff went to speak to the doctor. I waited ages to see the doctor, who didn’t arrive, and gave up (will try again tomorrow).

The hospital staff say that DAunt is eating meals but cannot tell me what she has eaten and over the last 3 days have had to dissolve and spoon feed medication.

The hospital restricts visits to between 2pm to 4pm and 6pm to 8pm. Only one nominated visitor is allowed which prevents me going in to ensure she is eating and drinking through the day.

During a visit yesterday evening the nurse pulled the curtain around her bed and began undressing her, I asked if I should leave and was told that I should go unless I wanted to see my DAunt naked. Why didn’t they say that they wanted to bathe her and why would they do that during visiting time?

The fast track funding application was made for nursing home or hospice care but there has still been no update.

The palliative care nurse at the hospital has not seen my DAunt since last Thursday. The doctor on the ward is never there. The nursing staff are unhelpful on the phone and just say that DAunt is OK and even gave me details about the wrong patient. I’ve asked repeatedly about medication and they keep giving me the wrong information.

My family don’t want me to complain because they are worried this may compromise DAunt’s care and make things worse for her. Should I cut the hospital staff some slack because they are busy or insist on better care? Ultimately, I don’t want DAunt to suffer and want her to be peaceful.

Complain you are her only voice right now and no one deserves to be ignored even at the end.

I'm sorry this is happening op your aunt is yound at 60 to be coping with this.
I would cut them some slack tbh and concentrate her discharge from hospital

I'm so sorry that you're having an awful time. I can't answer all your questions, but on the subject of bed rails, it's poor practice to use bedrails on a mobile confused patient. They are just likely to climb over the top of them. Bedrails are only recommended, with caution, for patients who are immobile. If falls are a risk, lowering the bed to its lowest point, or using a mattress on the floor without a bed, are recommended.

PALS. Get in touch with them and outline your concerns.
That at least will make those looking after your DAunt more accountable.
Also insist on speaking to a doctor tomorrow. Call the ward early, and let them know you need to speak to her doctor urgently.

Can help with a few of these as a student nurse.
Patients who are risk of falls will always have the bed rails down, seems counter productive I k ow but there is special bed rail assessments and any risk of falls patient (she will be if she's had a recent fall) should have the rails DOWN.
I've had to wash patients in the evening before, usually OT and PT and Dr's rounds are in the morning, then it's lunchtime, meds, obs, patients sleeping etc. So some times it is dinner time and it still hasn't happened. Strange they didn't tell you though, had you perhaps overstayed your visiting slot and it was a hint it was time for you to go?

She will be assisted with fluids, at least 2 hourly by the nurse/HCA and the tes lady comes 3 times a day in addition to that. Fluid balance sheets are completed so they will know what's gone in and what's come out.

I think that was everything?

Is there Macmillan person at the hospital? In my experience with my mum the ward she was on was awful and busy, then suddenly we were discharged with hospice help at home which was fine, I think it was the Macmillan nurse that helped push things along quickly

I am so sorry you are going through such a traumatic situation with a diagnosis that has come out of the blue.

Going through the questions you have asked one by one:

Bed rails may not be appropriate to stop her falling out of bed - they can be dangerous as people can get stuck on them and suffocate. They should have done a risk assessment and be using other methods, for example it may be safer to have a mattress on the floor. The ward should be able to go through this with you.

Not being able to talk as much may be a sign of the tumour progressing unfortunately - the ward doctor/palliative care nurse should be able to explain what they think is going on.

They should be offering her drinks when you are not there. If her urine is getting darker it suggests she isn't drinking as much - she may be getting less interested in having drinks.

Meals and drinks - there should be a food and fluids chart. It does sound if she now needs medication as liquids/crushed that she is changing quite quickly.

Curtain round the bed - no idea but washes happen at all times of the day.

Fast track - I have no idea where your aunt is in hospital but Fast track is only fast in comparison to the normal system which is painfully slow. It doesn't mean it's actually fast as normal people might understand it in any location I've worked.

If I were you I would think seriously if your preference for your aunt's care is hospice or nursing home - bearing in mind you don't need the funding for the hospice. You need to pick one or the other and then push for it.

You don't need to make a complaint but if communication is really bad, then speak to PALS as you need an update from the doctors/palliative care team as to what exactly is going on. It won't in any way make things worse, you just need some better communication and PALS are great at sorting this out.

Thank you all so much for your helpful replies, they have really helped.

I plan to call the hospital as soon as I can tomorrow to get some more information.

@tigerbread20 DAunt was bathed at 6:45pm, so I definitely hadn’t overstayed visiting time. I was a bit that the nurse didn’t explain what was happening. It wasn’t very dignified.

@tigerbread20 can I ask to see the fluid balance sheet? The staff have commented that DAunt is a good patient because she is very quiet, which isn’t her usual character and makes me worry.

@AnnaMagnani DAunt’s health has declined so rapidly, she was still working at the beginning of September. The diagnosis was give on about 20 Sept, the previous hospital suggested nursing home with palliative care because they didn’t think she was ready for a hospice & there are also long waiting lists for hospice care here. However, she has rapidly declined at an alarming rate this week and hospice would definitely be better for her. I don’t want DAunt to die in the hospital.