Do GPs 'wash their hands' of end of life patients?

Arty-girl

Registered User
Jun 29, 2020
60
0
Quick back story: March 2020 mum could go for walks with me (although she didn't feel safe on her own), she could hold an intelligent conversation and make decisions about things, she loved eating and would choose between 4 or 5 possible breakfasts every morning. She could also sit up unattended although she needed help getting up stairs.

Jump to March 2021: Still going for a daily walk with me up until Easter Sunday. Easter Monday had some kind of fit/seizure and spent 10 hours in A&E then sent home. Two days later she lost all mobility, unable to sit or stand. Was re-admitted by Active Recovery and was hospitalized for three weeks with a urine infection. Came home to a hospital bed where she has been for the last 9/10 weeks.

During all this time I had two short conversations with her GP. Since then, not a dickie-bird. Is it unreasonable to expect her GP to contact me (even if only once) after she was discharged to see how she is. If I need anything like meds or advice I spend more time speaking to his Receptionists, or other GPs. I've had paramedics out to her three times in the last three weeks due to her being in pain, which turned out to be fecal impaction. She was dianosed Alzheimerrs last November and while she was in hospital earlier this year, the consultant said she was end-stage ( suppose she had it for years but it was mild and unnoticed). Instead of me ringing ambulances it would be really nice for her GP to visit and offer some reassurances/advice.

Has anyone else noticed a total disinterest from their loved ones GP regarding their current situation? Or is this the norm?
 

lemonbalm

Registered User
May 21, 2018
1,799
0
Hello @Arty-girl

I'm sorry to read how your mum's condition has deteriorated. I've often felt that doctors lose interest once they know how hands-on and competent the carer is. I remember seeing "pro-active daughter" on my mum's notes and realise now that I was left to cope with everything on my own for two years before arranging a care home for her. I also remember a member of staff in a care home I visited saying "well, the doctors are reluctant to come out because they know the person's being well looked after" !

I'm sure some GP's are great but not many know much about dementia and I wonder if they perhaps shy away from those patients who have it.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hello @Arty-girl

I'm sorry to read how your mum's condition has deteriorated. I've often felt that doctors lose interest once they know how hands-on and competent the carer is. I remember seeing "pro-active daughter" on my mum's notes and realise now that I was left to cope with everything on my own for two years before arranging a care home for her. I also remember a member of staff in a care home I visited saying "well, the doctors are reluctant to come out because they know the person's being well looked after" !

I'm sure some GP's are great but not many know much about dementia and I wonder if they perhaps shy away from those patients who have it. Oh
My GP told me that indeed that was the case because they had so little to offer.
 

Suze99

Registered User
Nov 8, 2020
54
0
Although I am sure there are some very dedicated GPs out there my personal opinion, based on how my mum was treated, is that most are disinterested in the elderly.

Last June my mum was taken off all her medication by a locum after one low blood pressure reading taken by my cousin. No doctor or nurse visited. This led to mum becoming very agitated ( taken off her anti depressant she had been on for years) getting a UTI and falling. She eventually ended up in a care home after deteriorating in hospital with hospital acquired delirium and decreased mobility. Prior to this no interest had been shown in looking at her medication.

A move from Norfolk to Stoke on Trent where I live in September meant obviously a new GP but again no interest shown despite staff requesting input and a mild anti depressant to lift her mood. She caught covid in December 2020 and passed away on 4th January. The GP did prescribe end of life medication but didn't visit, discuss her health with staff or myself or even do a video call. The district nurse had requested this but he refused to do either. He was very blunt and unpleasant when I spoke to him, leaving me feeling very upset.

Much more needs to be done to educate doctors about dementia and it seems basic care of the elderly. They are often forgotten. Carers are not medically trained and need support .
 

Jessbow

Registered User
Mar 1, 2013
5,680
0
Midlands
I must have been lucky- Mum surgery the Drs each had a lead interest. The Dr that led 'care of the elderly' couldnt have been better.
T be fair, no, she never rang after Mums many discharges from hospital- my assuption in the data entry clerk simply entered the info on mums GP notes- Dont suppose the Dr a such even knew until such time as I rang her.
 

Palerider

Registered User
Aug 9, 2015
4,160
0
56
North West
HI @Arty-girl

I actually got concerned when mum moved to her new care home that there was no plan in place for mum, and after an admission to ED and a clear problem with her heart (she nearly passed) they offerred a pacemaker, to which I argued at mums stage was inappropriate (for a multitude of reasons), the ED consultnat agreed and at 4am I drove mum back to the care home.

After that I heard nothing from mums new GP and I was at my wits end with it because mum had expressed very clearly to her old GP (family GP) that if she entered the later stages of her disease she would not want any life sustaining treatment. I asked to meet mums GP at the care home with my sister and we had a discussion around what would happen if mum deteriorated, it was then agreed that mum was DNAR and for palliation if this happened again and she did not recover in say 24 hrs or it was obvious that she was dying.

There is a lot to take on board around these disucssions and getting the GP on board is important because they penultimately will help formulate a plan if there is significant deterioration in a disease progression that has no good outcome other than progression.

Sometimes we have to trigger these discussions, as hard as it may be, saving life in these scenarios is not humane at all or best interests
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
Quick back story: March 2020 mum could go for walks with me (although she didn't feel safe on her own), she could hold an intelligent conversation and make decisions about things, she loved eating and would choose between 4 or 5 possible breakfasts every morning. She could also sit up unattended although she needed help getting up stairs.

Jump to March 2021: Still going for a daily walk with me up until Easter Sunday. Easter Monday had some kind of fit/seizure and spent 10 hours in A&E then sent home. Two days later she lost all mobility, unable to sit or stand. Was re-admitted by Active Recovery and was hospitalized for three weeks with a urine infection. Came home to a hospital bed where she has been for the last 9/10 weeks.

During all this time I had two short conversations with her GP. Since then, not a dickie-bird. Is it unreasonable to expect her GP to contact me (even if only once) after she was discharged to see how she is. If I need anything like meds or advice I spend more time speaking to his Receptionists, or other GPs. I've had paramedics out to her three times in the last three weeks due to her being in pain, which turned out to be fecal impaction. She was dianosed Alzheimerrs last November and while she was in hospital earlier this year, the consultant said she was end-stage ( suppose she had it for years but it was mild and unnoticed). Instead of me ringing ambulances it would be really nice for her GP to visit and offer some reassurances/advice.

Has anyone else noticed a total disinterest from their loved ones GP regarding their current situation? Or is this the norm?
Yes I have. They started off ok but I have to email them every time. I have wondered myself if dad is due for palliative care but apparently people can go on for months eating and drinking ( dad has lots of medical problems) . They are seeing him this week at some point. But I always feel a nuisance.
 

Pots and Pans

Registered User
Jan 13, 2020
298
0
@Arty-girl My OH came home last year with post-op delerium on top of Alzheimer's. GP never came but they did send a paramedic attached to the district who specializes in the elderly and he was brilliant. He liaised with the GP over meds but was a regular visitor until OH got a home visit from consultant, with him, and care then passed on. But might be worth asking your GP practice if they work alongside anyone like that. It worked for us.
 

Dunroamin

Registered User
May 5, 2019
418
0
UK
It is no better when you are the PWD. I still have insight but when trying to discuss a concern regarding my husband that I feel needs investigation (I am a retired medic) I almost feel it is viewed as case of Munchhausens by proxy. Luckily I spoke to an out of hours ex colleague who immediately set the ball rolling.

As for my own care. Non existent following the retirement of my GP.
 

Arty-girl

Registered User
Jun 29, 2020
60
0
It's very sad (but helpful) to see all your replies to my question. It does make me wonder why the Government made such a big thing about giving Covid vaccine to the elderly first. "Let's protect the vulnerable." I know I'm talking here about the Government when my opening post was about GPs but I think they are all different cards in the same Deck and they really don't care about the elderly.

For some reason today Mum seems to have decided to ignore me. She engaged with her carers this morning although she hates being washed because it is so painful to be 'rolled' from one side to the other which means that when they leave I get the 'daggers stare' that I think says "Why are you letting this happen". Everything I've tried to give her today, foodwise, she has had a taste and then clamped her mouth shut. Whether this is her being her usual stubborn self or whether it's the time when they do give up eating and drinking, I feel like my resolve is fading and I'm getting perilously near the edge. I hope tomorrow's a better day.
 

Arty-girl

Registered User
Jun 29, 2020
60
0
I never thought about Marie Curie, I thought they were more for cancer patients. I'll look into it.
 

esmeralda

Registered User
Nov 27, 2014
3,083
0
Devon
Apart from responding to the need for antibiotics for infections which has been pretty good I feel that we've had a very poor service from GP's - starting with the brusque delivery of a diagnosis 7 years ago without any support at all. Years ago one GP said people such as my husband who has complex care needs and is obviously housebound, should be visited every 3 months for a check up. Sounds like excellent practice but it's never happened. Perhaps it used to in happier times. After he was discharged from hospital a few weeks ago it was very difficult to get him to eat and drink. The GP said I shouldn't 'wear myself out about it as I would only be extending his not very good quality of life by a few weeks anyway'. Brutal, but in a way helpful as it's a very stressful situation. As it happened he did improve although he's poorly with an infection or something at the moment - the weekend of course. I wish there was an alternative to 111 where you could just discuss things with someone sensible without having to wait hours for someone to get back to you.

I do hope tomorrow is a better day for you, this is such a difficult and isolating situation.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Perhaps I was just lucky because dad's GP was just wonderful, he even managed to get my phone number off dad so he could ring me because he was concerned about dads memory and that was long before dad was diagnosed. I told him that I was aware of it and would try to get dad in for an appointment but that took a number of years.

He even did home visits once dad became ill and needed a wheel chair for appointments, he said that it was much easier for him to drop in after surgery than it was for me to take dad to the surgery. He also used to ask how I was as well.

As for my GP I don't even know who he/she is because they change every five minutes.
 

Ton3

Registered User
Dec 2, 2019
90
0
Quick back story: March 2020 mum could go for walks with me (although she didn't feel safe on her own), she could hold an intelligent conversation and make decisions about things, she loved eating and would choose between 4 or 5 possible breakfasts every morning. She could also sit up unattended although she needed help getting up stairs.

Jump to March 2021: Still going for a daily walk with me up until Easter Sunday. Easter Monday had some kind of fit/seizure and spent 10 hours in A&E then sent home. Two days later she lost all mobility, unable to sit or stand. Was re-admitted by Active Recovery and was hospitalized for three weeks with a urine infection. Came home to a hospital bed where she has been for the last 9/10 weeks.

During all this time I had two short conversations with her GP. Since then, not a dickie-bird. Is it unreasonable to expect her GP to contact me (even if only once) after she was discharged to see how she is. If I need anything like meds or advice I spend more time speaking to his Receptionists, or other GPs. I've had paramedics out to her three times in the last three weeks due to her being in pain, which turned out to be fecal impaction. She was dianosed Alzheimerrs last November and while she was in hospital earlier this year, the consultant said she was end-stage ( suppose she had it for years but it was mild and unnoticed). Instead of me ringing ambulances it would be really nice for her GP to visit and offer some reassurances/advice.

Has anyone else noticed a total disinterest from their loved ones GP regarding their current situation? Or is this the norm?
Arty-girl

Its is almost as if I could have written your post about my MIL the almost exact thing happened with her and I can only put her longevity down to the care my wife takes of her (with assistance and support from myself where i can give either or both) My wife moved in with her mother in Sept 2020 after a sudden downturn in her condition after a short stay in hospital with a UTI, MIL had been independently living before this with memory problems and is now confined to a hospital bed in her lounge. We do have Carers coming in 4 times a day to deal with hygiene needs however on many occasions my wife has to assist as only one carer turns up for different reasons (MIL is down as requiring double handed) we too feel abandoned by the GP and even trying to get a district nurse (dont know if thats still their official title?) out is such a chore, we have to call the surgery be on hold with over 30 other callers to request a call back and sometimes have to wait till the following week to even get that. We too do not want to have to keep calling 111 when its really not needed we just want a GP/Nurse to check up on and advise sometimes.
We are considering calling Admiral Nurses for some advice or as somebody else advised Marie Curie. Good Luck and thanks for posting as with many posts you can identify and get some crumb of comfort from and yours was like I say a mirror of our position in so many ways...
 

karenbow

Registered User
May 24, 2021
106
0
Quick back story: March 2020 mum could go for walks with me (although she didn't feel safe on her own), she could hold an intelligent conversation and make decisions about things, she loved eating and would choose between 4 or 5 possible breakfasts every morning. She could also sit up unattended although she needed help getting up stairs.

Jump to March 2021: Still going for a daily walk with me up until Easter Sunday. Easter Monday had some kind of fit/seizure and spent 10 hours in A&E then sent home. Two days later she lost all mobility, unable to sit or stand. Was re-admitted by Active Recovery and was hospitalized for three weeks with a urine infection. Came home to a hospital bed where she has been for the last 9/10 weeks.

During all this time I had two short conversations with her GP. Since then, not a dickie-bird. Is it unreasonable to expect her GP to contact me (even if only once) after she was discharged to see how she is. If I need anything like meds or advice I spend more time speaking to his Receptionists, or other GPs. I've had paramedics out to her three times in the last three weeks due to her being in pain, which turned out to be fecal impaction. She was dianosed Alzheimerrs last November and while she was in hospital earlier this year, the consultant said she was end-stage ( suppose she had it for years but it was mild and unnoticed). Instead of me ringing ambulances it would be really nice for her GP to visit and offer some reassurances/advice.

Has anyone else noticed a total disinterest from their loved ones GP regarding their current situation? Or is this the norm?
dear arty girl my story although not exactly the same as yours mirrors what you are experiencing, my mum is end of life and getting any information from anyone whether it is hosp gp etc has been difficult- i always thought they would be there in hour of need and its been a shock to find i have to pursue them and when some one who understands does take the time to talk to me it is like i have been given a gift from heaven and i feel so grateful that they have spoken to me- ive found one of the worse things is not knowing or understanding what is happening , this makes you feel lost and floundering and wondering if you are doing the best for your loved one- i worked at a large gp practice for 31yrs and whilst they were all gp,s they all had different levels of empathy, experience etc - i do hope you find someone to help you with advice/ reassurance its so important- i on the other hand will continue to watch mum and ask questions -best wishesx
 

MartinWL

Registered User
Jun 12, 2020
2,025
0
67
London
The pressure of GPs is higher than ever and I won't use this forum to complain about the GP contract. GPs can't do much for dementia patients so they are bound to focus more on patients whom they can help more. I think it is really that simple.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
I hear so much about the NHS being rather overwhelmed, even before the pandemic hit us. Reading your posts sounds as if the GPs can’t keep up. I would have to say that my experience of GP clinics in the years that I lived in UK was that both doctors and staff seem to keep patients more at arm’s length than here.
I have never felt neglected and trust our GPs at our local clinic.

We do have clinics that are for interim visits but they make it clear that they do not take patients with ongoing health conditions. We have a 24 hour clinic near us so for minor emergencies and they can be a better option that waiting hours in A&E.

Our clinic offers everybody when they turn 75, a lengthy health check which involves a preliminary session with a nurse which can take an hour. They cover the basics like blood pressure, weight and discuss with you any concerns you have with your health. All that information is then used by the GP in a lengthy consultation with you. And then if necessary, follow up with further checks.

However, finding a local GP here who does home visits is impossible as we have several out of hours services that you can call for a home visit and the GPs are quite happy not to be called out all hours. Of course, it will be a doctor you have never met but I suppose that is better than not getting one at all.

I can’t imagine how much money it would take to bolster up the NHS but it would be an eye watering amount.