Hospital saying next time not to admit mum

[portocristo]

Mum is 86 and in a care home,she has alzeimers but imo not advanced you can have a nice conversation with her.

She is in hospital now with pneumonia and this is the third time since September. She responds well to treatment which is oxygen, intravenous antibiotics and sometimes a saline drip. The doctor has now said that the next time she gets pneumonia which she will as she has scarring on her lungs that she should be made comfortable with morphine and other end of life drugs and basically be left to die. I can't get my head around this it seems totally wrong to me, has anyone else had this situation? And can we refuse this suggestion?

You are in a very painful situation. I can only tell you that my mother (102) had three strokes in as many days. We took her to hospital the first time, sat there all day and in the end they just sent her home. After the third one we refused to let the ambulance crew take her to hospital. she was conscious enough to agree. So they tucked her up in bed and we nursed her for a week with help from her carers, district nurses and the palliative care team. It was the best decision we ever made. She was peaceful and calm and everyone could visit her to say goodbye and eventually she just slipped away with my daughter and myself holding her hands. Had she gone to hospital she would either have been ignored or had a lot of unnecessary interventions. Sometimes the best thing we can do for those we love is to let them go. She will always be in your heart.

She sounds very fit for end of life care. I would want to speak to a specialist nurse or geriatrician for the best way forward.

Perfectly sensible. My DM made this decision for my GM some years ago.
Society has to change its way of thinking on preservation of life.

This happened to my Dad. We understood they couldn't keep him alive forever, that there comes a point where the drugs don't work and it is one good day for the patient and a dozen bad ones on repeat. The best they can do is make the patient comfortable. A care home is a far better and more peaceful place to die than a hospital word where there is only a curtain between you and the patient on either side.
I understand that it is a lot to get your head round and it is a horrible situation. Enjoy the time you have left. The most important thing you can do for your mum is not allow her to suffer.

If she responds to treatment, doesn't find hospital too distressing, returns to more or less her baseline and maintains a reasonable quality of life then it sounds a little premature of the Doctor.

It is an option available but I think you will know when it feels right to consider that path, and I hope that someone very knowledgeable in this area can guide you through it.

For us, my Grandad has reached this point where hospital admissions were doing him far more harm than good. He had lost mobility, ability to feed himself, hold conversation. He was utterly fed up. His nursing home kept sending him to hospital whenever he was short of breath and the hospital kept actively treating him. In the end we initiated the conversation with a hospital doctor who more or less told us we were cruel as he could still beat infections. Luckily the GP sat and listened to us and completely supported what we felt. He's since been conservatively managed at his nursing home- has emergency oral antibiotics and steroids as needed, but that fear of being taken to hospital has lifted and we know that there are drugs available to keep him comfortable if needed.

My Mum had dementia. When she had her last stay for a stroke the doctors discussed a 'peace plan' with me. This meant that she wouldn't go into hospital again. She would be treated to keep her comfortable at home in her last months. It was the absolutely best thing for her. Dementia only goes one way.

I think the OP has left this thread but I'd be interested to know how they would like their mother to die. That sounds like I'm saying they should want her to die but it's absolutely not - it's accepting the inevitability of her death and then trying to manage it. As an 86yo with dementia who's had pneumonia three times in as many months, death is fairly imminent one way or another.

Personally, and this is what we did for my father, I would want it to be at home with familiar people and surroundings, nicely morphined up. I did not want it to be with an oxygen mask and iv antibiotics on an overstretched hospital ward. He might have lived a few more weeks or even months if he'd gone back in, who knows, but I'm happy with the decisions that he and I made.

A good question to ask doctors is 'what would you do if it were your parent'. The consultant told us he'd just been through it and they had 'prioritised comfort'.

I'm sorry though OP, it's tough.

OP. This is a shock but you have to prepare yourself. Think of what your mum would want when the end is sadly inevitable.

I’m sorry op. Agree with this^^

They may be able to refer you to a hospice for care and advice. . You don’t need to be at end stage to be helped.

I know the OP has left the thread but for anyone else in this situation, I wonder if there is a local hospice charity that could help? On the recommendation of the care home I contacted our local hospice at home and they sent someone to meet with me and my mum to "discuss" what her feelings were about hospital admission and treatment. Mum's dementia is pretty much advanced but given a choice where she only needed to say one word - hospital or here? - she chose "here".

The actual plan includes the words "only such treatment as is necessary for dignity or comfort" and I think that sums up exactly how I want mum to be treated at the end - with dignity and to be comfortable.

Why is everyone assuming that the OP's mum has told doctors to stop treatment?

Why is it ok to assume that just because someone has Alzheimer's disease, then somehow it's ok to end their life prematurely?

The OP has said she can hold a conversation, eats we'll, can walk around with the aid of a frame. Surely, her mum still has quality of life. But everyone is defaulting towards withdrawal of treatment.

If it were my mum, OP, I would ask more questions of the doctor to find out how he reached the conclusion for not giving more treatment.

I would also speak to relevant staff at Care Home to find out if the hospital had probably shared more on your mum's illness than you were aware of.

Next, I would speak to mum and see if the doctors have spoken to her. And what her wishes are in relation to a possible further infection. Basically, find put as much info as possible. But don't let people guilt you I to writing off your mum just because "they" would want to check out if they were in her shoes. It's YOUR mum, not theirs.

There are so many people with disabilities who aren't able to care for themselves. But they are allowed to live a dignified life. I don't see anyone hurrying to end their life on "compassionate" grounds.

And I say this as someone who worked in a hospice. I saw patients being denied food and given only sips of water BECAUSE apparently they were dying. Some of these people could have gone on for at least another two months.

I''m not saying it was done with ill intent, but it was certainly done with ignorance. In other countries, nature is allowed to take its course, and treatment is given for as long as possible to save lives.

@Bales23 because some people choose that
I'm 40 and have an advanced directive. If I have dementia I don't wish to have any treatment that is life prolonging no matter what stage of dementia
So if I have pneumonia and dementia then yes I would not get antibiotics

My mum made the decision for herself in a way and just refused to eat or drink and then got pneumonia leading to sepsis. We asked for no further treatment because that's what she would have chosen if she had capacity

To add, it's about a good death. End of life dementia is not it
Would you rather go earlier with pneumonia or end up being unable to swallow, use a toilet, move, speak or drink? We wouldn't let an animal live like that but we expect humans to

I sat and watched my mum die thinking this is ridiculous, she's dying and we can't even euthanise someone who is in the act of actually dying

I have no problem with anyone making a decision for themselves. My problem is the blanket assumption that just because someone has a certain illness, they ought to want to leave this earth.

As far as OP said, that isn't what her mum said and is certainly not what she would like for her mum.

Advanced alzheimers/dementia is horrific. A few years back an elderly person with pneumonia would be made comfortable and allowed to pass peacefully. Sadly no longer the case, and this is why we have 1000s of frail elderly folk wasting away in nursing homes, possibly for years.
Not for nothing was pneumonia known as the old man's friend.
Please don't prolong yoir mums (and your own) suffering x

My mum was in a care home and had aspirate pneumonia (?)

The doctor came to see her said they could admit her for O2, but she wasn’t going to get better. We decided as a family to allow her to stay at the care home and receive palliative care.
We felt the upheaval for her wasn’t appropriate. She died peacefully the following day.

The week before, she was walking/wandering around and chatting happily to staff and residents. She was enjoying her food, particularly prawn sandwiches.

Her demise was rapid and unexpected, but her passing was very peaceful, as she would have wanted. X

"Why is it ok to assume that just because someone has Alzheimer's disease, then somehow it's ok to end their life prematurely?"

An 86 year old not being given antibiotics for their 3rd bout of pneumonia in 3 months is not ending their life prematurely. It is ending their life where nature intended to.

All medical treatment is meddling with the natural order of life. You can't argue that doctors are playing god when they withdraw treatment in the patients best interest yet be quite happy for them to "play god" when they intervene by giving antibiotics to prevent the patient dying of pneumonia.

I’m an elderly nurse and this discussion tends to be had when patients are becoming more frail as the outlook doesn’t tend to get better.

the statistics around repeated admissions and mortality rate is pretty high and often it gets to the point where after repeated antibiotics and fluids, the deaths people have are ones that could have been a lot more comfortable in a familiar environment. It’s not uncommon for their hearts to fail and end up being overloaded with fluids which makes them struggle to breathe and procedures to drain fluid aren’t in their best interests especially in advanced dementia. Not for readmission doesn’t mean giving up, it just means prioritising comfort and treating what is able to be treated in the community. I really feel for you op as I’d probably feel the same way but deaths I’ve seen with just in case medications with morphine, midazolam and hyoscine are a lot more pleasant than patients deteriorating in hospital and ending up on end of life care after treatment options haven’t been successful. That decision has either been made by your mother or in her best interests. It isn’t uncommon for patients to express they don’t want readmission or they don’t want escalation but plead with us not to tell their family that they have decided that 🙁

You really should be able to discuss your concerns with her consultant however

I wish my 96 year old mother had stayed at home and just been given morphine and made comfortable. Instead she died on an NHS Care of the Elderly ward after 3 weeks of painful treatment and appalling nursing care.
When she realised the IV antibiotics weren't working she asked the Drs to stop treatment, which they did, but it still took 3 days to get her on the end of life pathway so she could have the drugs to make her comfortable. She was frightened, struggling for breath and in pain..

Admin had to be done as two Drs had to agree to this and paperwork had to be completed and everyone was too busy.

I'll never forget the relief on her face when the nurse came to give her the first injection of Morphine. She went to sleep and died 3 hours later.

After several hospital admissions,for falls and infections with xrays, scans, bloods, drips, ambulances and waiting, it was agreed no more and to treat her back at the carehome, The carehome my mum was in could give up to one round of 3 days subcutaneous fluids if she became drowsy, oral antibiotics but not oxygen, end of life medication was prescribed but not needed until the last few days. The only exception for admission was if she suffered a broken bone. She still saw a gp or nurse practitioner if she became unwell. She did feel they had given up but accepted at 90 she was nearing the end of a wonderful life and wouldn't go on forever.