Complain to hospice?

[Terrysnotmine]

Nc as outing.
Relative admitted to hospice last week as very unwell, not dying but unsafe at home alone and medical care needed.
Relative was deeply unhappy there, had to be sedated a few times as so upset (no call from hospice to say what had happened, only advised when visiting).
Hospice staff were aware 2 next of kin were visiting, who they were and they had been there everyday. Hospice were also advised that patient was very confused (one of the conditions admitted for) and to call next of kin to tell them of any plans, conversations that had happened as relative cannot be relied on to remember.

One relative had a conversation with staff members (2) on Sunday night and were advised to start looking for nursing home, wheels set in motion, carer had advised week before person was not safe alone overnight. Today same relative arrived to be told by patient that they are being discharged Thursday!!!. Relative then finds out that they had the conversation with the patient and another distant relative-relative is not next of kin and this is the first time they had seen patient in 3 weeks, plans had apparently been made and no one had informed next of kin.

Same visitor who had had all original conversations spoke to the doctor who said that the patient is fine now and the person on Sunday had looked at the notes on arrival and took their assumption form there.

There are reasons I cannot go into as to why having the distant relative was not a good idea to talk to, but I’m seething at the lack of information and constantly being told different things. One doctor said life expectancy of 3/6 months, were now 8 months later and on the whole well. Patient had a good few weeks being at home recently of sleeping, not eating, not responding, doctor said patient was entering the dying phase, they made s full recovery from that period, all though patient is massively up and down.

Would you complain about being told one thing one day, another doctor saying something completely different the next day and the distant relative being told things before next of kin were? Next of kin who have provided all care pretty much since diagnosis, distant relative nowhere to be seen.

What has the hospice said so far in response to your feedback?

I would nominate one relative to be the person speaking to staff and ask them not to give information or discuss discharge plans to other relatives. This then saves miscommunication. As for Drs saying they had a certain length of time to live, they can only base that on their experience and things do change. I worked in a hospice for 15 years and saw many patients given a few weeks to live but then rallied round.

The hospice didn’t seem to get what I was trying to say. I said I had concerns in that the patient was so up and down, and was worried about what happens when patient becomes ill again, as they will. I explained to them the circumstances as to why the distance relative should not of been told and the seriousness of what could happen (distant relative is abusing patient, the hospice told distant relative they could stay with patient). When I asked why were next of kin not told, no answer. I couldn’t seem to impress on them what they’d done and why did they not call? Actually worried in trusting them now with diagnosis and actually providing care for patient.

Babyroobs. We did ask them not to discuss, I get that people can change, but from needing nursing care to fine alone in less than 2 days?! They kept saying about the pressure they were under to get patient out s someone else needs bed, I totally get that.

Obviously YANBU op, this is terrible care. No idea why people are voting YABU. You should def complain

If it's anything like where I used to work they are keen to get stable patients moved as there is just so much demand on beds and they are needed for patients with the most complex needs- complex pain control issues, end of life care and terminally agitated etc. Does the hospice have a discharge Nursing team who you could discuss a package of care with ? They should not be discharging without making sure that discharge is safe. Hope you manage to get some reassurance.

You do realise that there is no legal status as ‘next of kin’ and that if the patient is deemed to have capacity they are able to make their own decisions?
Your post is a bit confusing - why would staff be phoning up relatives to tell them the general news of the day? Surely when the relatives visit, the patient can tell them whats been happening, then the visitors can confirm this with staff?
also, would you really complain that the doctor told you their life expectancy was 3 months and now its been 8 months - surely thats a good thing?

Absolutely, stable patients should be moved on and apparently current package of care is enough despite hospice saying they needed more last week.

In relation to the hospice communicating with next of kin, as I explained patient has a history of confusion which the hospice saw and were aware of.

I work in discharge care and discharge plans can and do change very quickly. We can have one plan in the morning and a different one in the afternoon.

Does patient have capacity?
How did ward get the details of/who told the relative you don't like they were in hospital?

Discharge was not discussed with next of kin, there’s no extra support in place. I feel it’s an unsafe discharge.

The distant relative that is abusing the patient was there for the first time today, patient has been in a week, next of kin both been there every day.

But as asked above, does patient have capacity? Do NOK of kin (which has 0 legal standing) have LPA?

Apologies. No POA and patient is deemed capable yes.

Was discharge discussed with patient and are they in agreement? If so, then they've done nothing wrong.

I've had relatives feel increased care is needed and sometimes I've agreed however if a capacitous patient refuses, I can't do anything.

Yes discharge was discussed with patient, patient had to be sedated on a few occasions as they were so upset about being in the hospice.

No option of more care being given, all being pushed on to relatives again

If they have capacity are they aware and happy other relative has been involved?
What level of care are they requiring? Are they mobile/continent?

People that are being abused often don’t realise or are too scared to say anything., Patient wants to get out the hospice so badly they would of said anything to get out.
They are semi mobile, approx 5 falls in last 5/6 weeks and sometimes incontinent.

Have they had a care assessment by SS?

No care assessment by social services.

I assume you are NoK? Will the patient give you PoA for health? that would be by far the best option and then you can tell the hospice or any other carers to only speak to you or the patient and not distant-relative.

Yes I am NOK, I shall be applying for POA but this can take months.

If the person is abusing the patient why are they being allowed to visit and have the police been contacted?

So at this point here’s what I would do… (keeping in mind I’m in America and legal things are different here).

1. Start the POA process. Over her it only requires a form to be filled out and witnessed.
2. ‘Do you have medical POAs? If so get that started.
3. Start talking to the discharge team about next steps. If he wants out, he wants out. He’s competent so you’re going to have to work with him (as you should) to make the situation as good as it can be.
4. Be more assertive with his care. If you have concerns about the relative bring them up to the team.
5. Talk to him and come up with a plan that works. You may end up bringing him home only to bounce back after a short time. So what. Let him have that short time at home.

it’s hard but he clearly wants to go home. Help him do it, even if it’s not the ideal choice. Clearly he doesn’t have a lot of time left help him to live how he wants.

(I say all of this being in a similar situation atm)

Abuse has only just come to light and sadly I think it would be too much for the terminally ill person to cope with police etc but measures are now in place so it will not happen again.

Thank you, it’s great advice. Whatever time they have left we want them to enjoy it, as long as they are safe