What’s going on in hospices? (Thread)

A few wks ago, I reported on care homes and their situation with #Covid19

Last week I spent some time at a hospice, the @PAHospice in Surrey. It’s another crucial part of our care system under huge strain and I wanted to tell their story.

First- Britain’s 260 hospices and their staff do incredible/invaluable work.

It isn’t just about end of life care. They’re enormous medical institutions, employing v highly trained staff.

@PAHospice alone has 22 patients who are onsite but help 1000 people in the community.

They’re important at the best of times, helping those of us at the end of our lives and their families make sense of it all.

But now they’re doing even more.

They’re being expected to take on more patients, patients who might normally die in hospital.

They’re also having to transform what they do as part of their end of life services

Palliative care is all about touch, being close to family and friends and memory.

In many cases that is no longer possible

visits are now v limited

Family/medical staff must wear PPE

Medical staff tell me how incredibly hard it is to now not be able to hug their patients, to hold their hand, to have to communicate to them through gloves and goggles, right at the end of life.

They told me what is already a terrifying set of moments is robbed of its humanity.

A chaplain at the hospice told me how typically he would sit with patients, take their hand, offer a prayer- in many cases that is no longer possible.

Imagine the trauma of those already dying, discovering that they’ve contracted Covid19. That’s the situation staff in many hospices are having to navigate, whilst also trying to protect their own physical and mental health.

I spoke to a wife and daughter, whose husband and father had brain cancer, who then developed #covid19. He’s since recovered from coronavirus but the family told me it felt completely bewildering that their situation and grief has been made yet worse.

One incredible nurse and clinical lead, @GullKeetje, told me that the hardest thing has been to tell family members and patients that they cannot see their loved ones or can only do so in a limited fashion. It’s taken a real toll on staff.

Staff are torn- they want to do what they do best, help their patients, especially now. They also know that family visits pose a risk to their health and their own families.

“All our instincts are to hold them close to bring them in our arms- it’s heartbreaking to know we can’t”

The calculation of risk is different in a hospice vis a vis a care home. In the latter it’s about hermetically sealing the residents, for fear of the lethal consequences for them of contraction. In hospices, the main risks are for staff and visitors.

But hospice staff must balance that risk against the horrors of patients dying alone and the mental scarring of families being deprived of those precious last days with their loved ones. It’s an invidious set of choices facing a sector which was already stretched.

Staffing is proving a huge problem. Like everywhere else in medical care, lots of staff have been off ill (at one point a third of staff members were off simultaneously) or self isolating.

More testing and PPE would ameloriate all these problems.

Testing would help staff come back to work and reduce the risk of patient visits but there’s v little of it available.

PPE is another problem. St Alice’s received an emergency supply last week but they don’t know when the next is coming.

Staff say that were it not for the community helping make PPE, makeshift gowns/goggles, raiding dentists and the like, the hospice couldn’t have stayed open.

A manager tells me: “For every patient I bring in that supply will diminish every day. Every visitor I have the same. We had to put it out on Facebook because the promised NHS supplies didn’t come. The second promised supplies did not come...

“...then we were told another system would be up and running. Yesterday we called them saying we don’t have a log in. It’s been so difficult.”

Remember too that hospices are charities. Only 20% of their income comes from the state. Most of their income sources have dried up as a result of the crisis.

That’s at the same time as they’re being asked to do more. Govt has promised more money (last week £200m per quarter but the sector is awaiting the detail. They say a previous £25m pledge from August didn’t materialise in the way they expected)

Make no mistake, without that money many hospices will collapse.

Hospices deal with end of life care. Their work has never been more important. I was astonished in just one day at St Alice’s at the dedication, love and sheer humanity of the staff there. In some ways it was a very dispiriting day and in another it was deeply uplifting.

It’s an overused term in this crisis but the people who work their staff and volunteer alike are the absolute best of us.

If this virus lingers their knowledge and skill in dealing with end of life will never have been more important.

Many dying patients want to be at hospices rather than hopsital. Patients there told me that they feel they’ve won the patient lottery, as difficult as that might be to understand. They want the calm, tranquility and expertise they provide.

We can’t lose them.

There’s lots more to be said and to see- please do watch my special report tonight on @BBCNewsnight, from me @jackwgarland and @YasminaraKhan. 10.45pm, BBC2.

Here’s my full report on the crisis in our hospices from last night’s Newsnight: