To think this is barbaric?

[BippityBoppityBloop]

Not sure if barbaric is the right word, but I'm really angry and upset.
My MIL has cancer, she is 75, it has spread and she's gradually gone downhill. She has had mcmillan nurses going to her home but she has decided enough is enough and she wants to die. She has requested to go into a hospice.
This is fine of course and totally her choice. I've heard they are amazing places.
But, big but! There are strictly no visitors, so DH and his sister will have to leave her at the door and will most probably never see her again.
I just can't get my head around it. DH has been strong for his sister but tonight he broke down😢
How can this be happening?

Choose a different hospice.

My mum died in a hospice during the last year during Covid restrictions. It was her wish to die there as she had gone there for day therapy.
At that time their restriction was 2 visitors per day in the afternoons and unlimited in the last 24h and that was great for her and for us. We actually tried very hard to avoid her going to the acute hospital as there was much more restrictive visiting there
I do think that if her husband and kids could not have come she would have chosen to die at home instead although it was getting very hard nursing her at home the last week. She certainly felt safer in the hospice
We were asked to step out of the room if staff were present and or distance and wear a mask

The reason for having Covid restrictions in a hospice is to avoid a staff outbreak that would mean the hospice cannot run safely and has to close. Patients of course are dying anyway but if staff get it from a patient or family member then they would not be able to operate

I would think OP should clarify the visiting with the hospice directly and whether there are exceptions in last 24h with mitigations like PPE and LFTs

If there isn't another hospice nearby, (quite likely, I'd have thought) then maybe consider a nursing home for respite / end of life care?
The hospice near me will only take people in the last 2 weeks of life (estimated) as demand is so high for their services.

Is it temporary? Most care homes have requirements that you have to have a special PCR, so there is a delay before you can visit.

@Wasywasydoodah

Definitely find another hospice if you can. That sounds awful

Eermm, how many do you think are available from which to make a choice? This must be an issue related to a staff outbreak rather than national policy. Places can stop visiting at their discretion

Yes that is another possibility that new patients have to isolate on arrival for a set amount of time or until a negative PCR
I have not specifically heard of it in a hospice but it's standard practice in care homes and hospitals
It would still be quite bad in a hospice if that is the policy as patients are necessarily there only a short time

Can you double check with them that there has not been a miscommunication? My trust has been i would say pretty strict with the rules but at end of life we would allow visitors to stay the entire time, preferably close family but there's no rules just guidance. We do not under any circumstances want people to die alone and if something unexpected happens there is usually a few staff sitting in the room while the family drive in. Can you check with macmillan nurses that you know as they should work pretty closely with their local hospice and would have an idea of their policies. Even if there was an active outbreak I can't see a hospice denying family access at end of life, i would think that they would want you in but maybe not allow you in and out/to swap visitors?

Wow that’s not on at all. I’m sorry OP!

Double check. I’ve unfortunately been a visitor in two hospices in the last couple of months. Both were pushed to the limit and had different restrictions, but both were wonderful and staff did everything they could to facilitate access.

My dad died in November in a hospice. He was there for about two-three weeks. He was allowed two visitors each afternoon (although they bent that for my husband to join my mum and I). His last 72 hours or so, he was allowed unlimited visitors at all times. My mum was given a camp bed to sleep next to him. We were treated spectacularly and offered hot drinks at all hours of the day.

My gran died in December in a hospice at the other end of the country. Rules were different and stricter initially, but as she became more ill, more people were allowed in. She had five people with her at the end.

Sorry I cant believe this. I. An nhs professional and you can visit anywhere with an NHS vaccine pass and a mask. Especially a hospice.

Oh my blood runs cold reading that OP. Find another hospice. Barbaric, inhumane, just absolutely freaking ridiculous.

My mum died in hospital when things weren't so bad in October. Hospital was amazing, once she was in the Palliative care unit, they told me I could visit whenever I wanted, brought me a comfy chair and cups of tea, and said I could take my mask off when it was just me and her.

I remember one nurse said, "I'm so sorry about your mum. It is hard crying wearing a mask, you don't have to keep it on, my dear."

Find somewhere that thinks like that.

My sympathy is with all of you at this very difficult time, best wishes x

@LovePoppy

Is it possible that MIL has set this rule up and is blaming the hospice?

This.

@Georgeskitchen

My sister passed away in a hospice last January when we were in lock down . Because she was on end of life care the visiting was unlimited. Only rule was that it was the same 2 visitors in each 24 hour period

Oh I am so so sorry about the loss of your sister . Sisters are special beings. 💐

Is this right OP? My dad died OF Covid in hospital and we were allowed to see him when he was end of life. We didn’t make it in time but we could have gone into the room and said goodbye too even though he actually died of Covid pneumonia.

We didn’t even abuse of the risk to mum, but I’m pretty sure she will be allowed visitors with certain rules in place.

💐

That's very strange that no visitors are allowed especially at the end of life.
This is not what a person at the end of life wants.
With the recent government guidance, 2 visitors are allowed plus 1care giver.
And before the visit, everyone need to do lft test and wear ppe (apron, gloves and mask).
At least thats the rules in the nursing home where I work.
The only strict no visitors rule is if there was someone from staff or resident have tested positive. So the home is in temporary lockdown. but that's is not for long.

and just to add, new resident is in isolation for 10days, so no visitors then.

Thankyou everyone
It's definitely not MIL rules, the nurse who visits mil has liased with the hospice and told DH these are the rules.
Mil lives out in the sticks and this is the nearest hospice but is still 15 miles away.
I am going to phone the hospice this morning and see if there has been some miscommunication.
Mil was happy to stay at home but the last week has gone downhill and has requested the hospice care.
I havnt slept much tbh, I'm more angry than anything.

My 94yo dad has been in hospital for 2 weeks with no visitors. Yesterday they decided he is not going to recover and is dying. He is now allowed 2 visitors for very limited periods. My mum and 1 of his 3 children.
Yes it is barbaric.

My mother was in hospital last year and for a while was without visitors. After a few weeks, I spoke to patient liaison and said that it was barbaric ... we were allowed in the next day.

What is it about the hospice care that she will get that she can't get at home, is there any way of thinking outside of the box and reproducing that at home? I know resources are stretched, we cannot find any at home care for my mother, private or otherwise, despite the fact that she has been approved to have carers.

I can only think this is some sort of mistake, do ring the Hospice to clarify their visiting rules.

Sounds strange, maybe an ongoing outbreak of covid there at present?

A relative of ours passed april 2020, right in the thick of lockdown, unlimited family were allowed to visit, as long as it was 2 at a time.

Quote the government guidance on end of life visits:

1.2 End of life visits
Key message
Visits at the end of life should always be supported, without limiting the number of visitors. Families and residents should be supported to plan end of life visiting carefully, with the assumption that visiting will be enabled to happen not just towards the very end of life, and that discussions with the family take place in good time.

Visitors for visits of this nature should be tested using lateral flow tests. For information on how to test, see the guidance on rapid lateral flow testing in adult social care settings.

End of life care (for residents in care homes) means identifying early those who are in their last year of life, and offering them the support to live as well as possible and to then die with dignity. NHS guidance on end of life care is available to support this process, as well as advice from the British Geriatric Society. There is a role for care home staff to support residents with end of life care, and visiting is an essential factor in this.

The enhanced health in care homes service provides a framework for support from general practice, the care home clinical leads and local multidisciplinary teams (which may include community nurses and professionals as well as specialised palliative care teams).

This support involves early identification, as well as a personalised care and support planning approach with good communication with the individual, their relatives and care home staff through the weekly home care round. The British Geriatric Society advice can support communication.

As a resident approaches the last months, weeks and days of their life, it continues to be important to communicate well to enable good and timely decisions around care. Planning these visiting arrangements should proceed from the assumption that visits are enabled in the final months and weeks of life – not just the final days or hours – albeit recognising that these timelines can be difficult to determine with accuracy.

www.gov.uk/government/publications/visiting-care-homes-during-coronavirus/update-on-policies-for-visiting-arrangements-in-care-homes#visits-in-all-circumstances

We had to do this in order to get my dad's care home to allow us daily visits. Sadly he passed away a couple of days later, but they should be more flexible le in these circumstances.

Wishing you the best of luck this morning .

Try and look for another hospice

Villanelle orange coat. We had same as you a years ago. Still feeling the pain of this barbarity. Trying to focus on a long life well lived and loved.
Cannot bear to remember the last weeks alone deprived of the comfort of loved ones.
What have we become?

@BippityBoppityBloop

Thankyou everyone It's definitely not MIL rules, the nurse who visits mil has liased with the hospice and told DH these are the rules. Mil lives out in the sticks and this is the nearest hospice but is still 15 miles away. I am going to phone the hospice this morning and see if there has been some miscommunication. Mil was happy to stay at home but the last week has gone downhill and has requested the hospice care. I havnt slept much tbh, I'm more angry than anything.

15 miles is quite far but if they are willing to get her into that one surely another one a bit further won’t matter too much? I think it’s more important that she has her loved ones around her during her last days.