DF in medical emergency at care home

[LaBelleSauvage123]

DF has deteriorated over the last few days and is struggling to breathe. Dr came today and said his lungs sound clear but she thinks he has an upper respiratory infection. This is complicated by dementia and an old neck injury which has affected his swallow. He is on the respect pathway, so no admittance to hospital for invasive treatment. They are giving him morphine/Midazolam but it doesn’t seem to be helping. The home staff seem panicked - they haven’t seen this before - but are reluctant to call an ambulance. It’s particularly bad at night. I am terrified that he’s going to die in distress, unable to breathe. Surely in these sorts of situations, paramedics ( or an OOH dr) can come out and give stronger meds? Has anyone got any advice?

Does he need oxygen and do the care home supply that?

i do think a paramedic should be called, yes. I realise it's a case of "no invasive treatment" but if he needs oxygen to be comfortable then maybe paramedics can supply?

Are the district nurses involved? They should be, and should be over seeing the administration and effectiveness of the drugs

There’s a nurse at the home who’s overseeing everything but he seems a bit casual tbh. The home don’t give oxygen - we asked that earlier

Have you been there yourself, are you able to go? Is DF able to say what he'd like to be done?

Is your Dad in a care home or a nursing home? I'm going to be brutally honest and share that my Dad died in a nursing home after a transfer from a hospice and they were absolutely useless. One nurse on duty for 50 residents, drug rounds that took forever that you couldn't access them during, and I would have to scream/shout to get Dad's medication administered. And this was with a palliative care specialist nurse overseeing his care along with the palliative consultant. I deeply regret not moving him.

I appreciate the respect form but you could ask for hospital admission (especially if you have a local geriatric care one) for palliative care.

Is your DF in a nursing home or a care home?

Do the DN’s visit to administer the morphine and midazolam?

OP, I’m just wondering if anyone has spoken to you about the prognosis for this illness? Have they suggested that your DF may not survive this respiratory illness? If they’ve started giving subcutaneous morphine and midazolam they usually form part of the “End of Life/Just in Case/Anticipatory Medication” prescription and suggest that the end might be near. If he has any rattley chest/throat secretions then he can also be given some Hyoscine to help dry those up.

It’s really not okay that the care staff are so flustered by it that they’re passing that same anxiety onto you, this really cannot be the first occasion they’ve come across with someone in this set of circumstances.

Can you speak to the home manager about things and see if they can get him reviewed by own GP or OOH GP tonight?

GP can possibly arrange home oxygen if necessary to relieve distress, rather than prolong life.

Yes the nurse should call for medical advice unless he is on the palliative care agreed by his doctor and this would be documented

Is your DF funded for nursing care? I should think so with his Dementia diagnosis and swallowing difficulties - and in this case the nurse should absolutely be stepping up to completely manage your dads current condition, the anxieties of the care staff and liaising with you about what is going on.

DN’s won’t visit where there is a registered nurse caring for the patient.

ThAnks for all your replies - I’m going over now and my sister is already there. Yes we do feel that he’s probably at end of life but don’t want him to die in distress.

He’s been on hyoscine for ages - not helping

It’s a care home but has a nursing wing ( he’s in the dementia section). He has FNC.

DF isn’t able to respond or tell us what he’d like to happen so it’s up to us

As others have said, you need the District Nurses who are very skilled in palliative care.

OP could the breathing be death rattle? Dad sounded like for a couple of days before death - and the flipping doctors didn't agree that it was death rattle!

do whatever makes him more comfortable, but there may be a very hard bit before he passes to peace. I'm sorry, I know this is horrendous.

Pp said "It’s really not okay that the care staff are so flustered by it that they’re passing that same anxiety onto you, this really cannot be the first occasion they’ve come across with someone in this set of circumstances."

On one level I agree.

But mum's been in respite care twice and carers are often new because they don't stay long.

dad had experienced nurses who were visibly distressed by the state of him, the calm ones might have come across as blase to some. I probably came across as barking orders at HCPs!

Once he has got the right doses of morphine and midazolam on board then he shouldn’t be in any distress at all. He should be comfortable and pain free.

Please don’t hesitate to escalate to the home manager if you’re finding the nurse particularly laissez-faire at the expense of your DF’s comfort.

There should be four drugs on the drug chart that they can give in small doses as needed (up until a certain quantity of doses in a certain period of time - at which point they would need to consider switching his prescription over to a syringe drive so that the medication is given continuously).

Morphine (or Oxycodone or diamorphine) for pain or breathlessness.

Midazolam (or haloperidol) for agitation, delirium or anxiety.

Hyoscine (or glycopyrronium) for chest secretions or excess saliva (with swallowing difficulties your dad might already wear a hysocine patch behind his ear).

Cyclizine (or Levomopromazine or Metoclopromide) for nausea or vomiting.

Don’t be afraid to ask them to give something if you feel the need isn’t being anticipated by the nurse on duty.

They'd only be involved if it was a residential home rather than a nursing home

Levomepromazine is also quite effective for agitation

It depends what drugs are used for the EOL pathway in the OP’s DF’s area. I’ve tried to cover all of the common options, but a slight change of postcode/boundary and the local prescribing committee will favour the use of one set of drugs over another.

I know this isn't a good way to look at it but it is around time for night shift staff to come on. So a different nurse and different carers. Hopefully they may be better. If not there is nothing to stop you being clear that you expect an ambulance called and will call it yourselves if they don't.

I don’t think an ambulance would be appropriate or necessary.

They could insist that 111 is called for an urgent home visit from the OOH GP if they feel he needs reviewing.

With adequate morphine and midazolam on board he shouldn’t be struggling for breath to the extent of needing oxygen, but if he does require oxygen for comfort the ambulance could only give it for the duration of the visit, and then it would leave with them again. The OOH GP can request delivery of a home oxygen concentrator from BOC if deemed appropriate for his current condition, and that is usually delivered within 24hrs.

The most significant professional in this situation who needs to step up and get things managed properly is the Nurse on duty.

I hope OP arrives to find that her DF is actually very settled and calm.

Thank you all for your replies. DF died about half an hour after I arrived at the home. In the end the staff did all the right things and he was peaceful and settled. It’s just very very sad.

I’m so sorry for your loss LaBelle. I’m very glad that he got the right care in the end.

I am so sorry for your loss, but I am glad you were able to be with him and that he went gently. Take care of yourself.

Oh LaBelle, I'm so sorry x I'm glad you made it in time, and felt his final moments were peaceful. Be gentle on yourself x

💐💐