Inside the hospice: What end of life care really looks like

There is one word that comes up again and again when speaking to people who have experienced a hospice and the staff who work there – ‘angels’.

It is the word I couldn’t get out of my mind after spending three weeks at Bury Hospice while my dad was dying of cancer.

During the summer of 2020, in the midst of the pandemic and complex lockdown restrictions, my sister and I spent those blurred weeks at dad’s bedside, clinging to his hand, praying for a miracle. We barely made it to the end of each day.

However, that impossibly difficult period of time was made survivable thanks to the incredible care, compassion and empathy offered by the hospice staff.

While we focused our energy on providing comfort and routine for our dad, in the background, the nurses were seamlessly managing his pain and increasingly complex symptoms, working hard to preserve his dignity and independence, and shielding his loved ones from some of the upsetting realities of serious illness.

The staff exhibited a patient warmth and tireless kindness on a level I have never before experienced outside of my closest circles, and they were simply doing their jobs.

Bury Hospice is not the exception. This is how palliative care operates up and down the UK. In every county and borough, hospices provide invaluable support during the most difficult times in people’s lives, and yet they rely almost entirely on charitable donations.

It costs £2.9 million per year to run Bury Hospice, which breaks down to £7,958 per day – but they only receive 23% of its funding from the government. The rest, they are forced to fundraise to bridge the funding gap.

In fact, all independent hospices only receive up to a third of funding from the government. According to the Sue Ryder charity, the running costs of the palliative care sector are estimated to be £947 million a year between now and 2030. If government funding remains the same, the hospice sector will be required to fundraise £597 million every year to keep hospices open.

Having relied so heavily on a hospice to get our family through those impossible last weeks of dad’s life – from his day-to-day care right up to bereavement counselling in the early stages of our grief – it is unthinkable that palliative and end of life care is not a funding priority for the government.

If death and taxes are life’s two guarantees, surely we must use the latter to help improve the conditions of the former. 

Most people don’t know the full extent of services that hospices provide until they are in the unfortunate position of having to use one for themselves or for a loved one.

For example, while there’s the common belief that it’s a place where you spend your final days, it’s not entirely accurate, as hospices can also be used for respite to control pain and provide support with the end goal of going home again afterwards.

Karen Walker is the ward manager at Ashgate Hospice in Chesterfield. She wants to dispel some of the myths around hospice care and improve awareness around what the end of a life can look like.

‘The hospice is a happy place which is sad at times, but there is laughter, there is joy for our patients and their families,’ Karen tells Metro.co.uk.

‘We’ve had a lot of weddings at the hospice. At Easter, a local farmer brought in little lambs for the patients to cuddle and feed, and had some photos taken for them. We do carol singing at Christmas, and birthday parties – we have a lot of celebrations.

‘That is really important because when you are faced with the information that time is short, you’re trying to cram everything in, but you’re not always well enough to go and do those things – so we try to support our patients to do the things they want to do within the hospice.’

Karen says she had one patient who was determined to go to the pub for a last drink with her friends, but when the day came, she was too unwell to make it out.

‘Instead of just abandoning the plan, our catering team put on an afternoon tea for her and her friends and they had sparkling apple juice because she didn’t fancy a glass of Prosecco,’ Karen recalls. ‘It just gave her that bit of normality that she was craving.’

Karen has been a palliative care nurse for 12 years, she says she certainly isn’t in it for the money.

‘I can honestly say that I have never had a day where I don’t want to come to work,’ she says. ‘Sometimes I worry about what’s going to hit me when I walk through those doors, but I just love my job. It’s a real privilege to be invited into somebody’s life at such a vulnerable time.

‘It takes a certain kind of person to work in this kind of environment, and you have to be mentally resilient at times. We are humans, and we do build relationships with patients and families. It’s tough being around death and dying a lot of the time.’

For Donna Goddard, St Barnabas House hospice in Worthing gave her and her family much-needed respite during her dad’s final days in 2016.

‘The reality of death is dirty, and can be really demeaning for the person as well,’ Donna tells Metro.co.uk. ‘My dad was quite proud, and even at the end he still wanted to do as much as possible for himself. So, for us, him dying at home was just not something any of us wanted to happen.

‘The hospice felt like this magical alternative space, a place where we knew he was being cared for, where we didn’t have to worry that he was on his own if we weren’t by his side every second.’

Donna says she was blown away by how much of the treatment was about the preservation of dignity, something she says was a gift that she will always be grateful for.

‘I remember feeling initially confused that the hospice staff were doing physio sessions with my dad. I was thinking – he can’t get better, why are they bothering? But I realised that actually it was about preserving his mobility for as long as possible, so he could continue to go to the toilet by himself without using a catheter. It’s hard to put into words how much that meant to him and to all of us.’

Donna adds that the hospice removed a lot of the admin and the stress that would have occurred if they had been caring for her dad at home.

‘It meant we had somewhere to go where we could spend actual, quality time with him, and we didn’t have to be worried about feeding him, washing him, clothing him, helping him to the loo – which I don’t think many parents want their children to be doing for them.

‘This probably sounds awful, but it also meant we could leave. It is so stressful to go through that, and there were times where I was like – I just need to leave this room and not be here right now. It meant we could go home, we could get rest, we could get a little bit of space from what was happening.’

In 2021, Sue Ryder charity called on the government to end the ‘funding crisis’ facing the palliative care sector and commit to covering 70% of the costs of hospice provision.

‘In order to pay the salaries of our doctors and nurses who provide expert care, pain and symptom management to people at the end of their lives, we rely on people buying second hand clothes from our charity shops or running a marathon and asking their friends and family for sponsorship,’ says Heidi Travis, chief executive at Sue Ryder. ‘It is unfathomable that such a critical part of our healthcare system is hanging by a thread.’

While the government provided some one-off funding to allow hospices to support the NHS during the pandemic, Travis adds that the hospice sector has ‘papered over the cracks for as long as possible.’

‘The country’s hospices can no longer operate with ad hoc financial “top-ups” that do not fundamentally address the serious long term funding crisis facing the hospice sector,’ she explains.

However, despite hospices being a vital lifeline at a time when things feel most helpless. its funding crisis is only likely to get worse thanks to the cost of living, and the spiralling costs of energy.

In September, children’s hospice Ty Hafan, in the Vale of Glamorgan, revealed that it is facing a £500,000 annual increase in its energy bills. They described the crisis as ‘worse than the pandemic’.

While the cost of living squeeze has led to Nightingale House hospice in Wrexham seeing a 36% drop in donations from the local community. Their lottery, supported by thousands of local people, has also seen a dip in memberships which people have been forced to cancel because of the rise of household bills.

So, where is palliative care on the government’s agenda? You’ll have to search pretty hard to find it.

To make matters worse, hospices are categorised as businesses so they don’t qualify for any energy cap to help with spiralling costs. Charities and hospice bosses are urging MPs to step in and do something.

There is an ongoing crisis of care beyond hospices too, with a critical shortage of workers providing social care at home impacting society’s most vulnerable. 

New figures show the number of care workers in England has fallen for the first time, leaving more people without support. Meanwhile, the number of empty care jobs rose by 52% in a year, says industry body Skills for Care. The research found there were 165,000 vacant social care posts – the first drop in ten years.

Hospice staff are not just nurses – they are angels in nurses uniforms

In a letter to former chancellor Nadhim Zahawi, Mary Kelly Foy, Labour MP for City of Durham, warned the 12 hospices in the North East and North Cumbria would be in a ‘parlous financial state’ because of the rise in energy costs this winter.

In response, a government spokesperson said: ‘No national government can control the global factors pushing up the price of energy, but we will continue to support businesses, including hospices, in navigating the months ahead. 

‘This includes doubling our support for high energy usage businesses, reducing employer national insurance by increasing the Employment Allowance, slashing fuel duty, introducing a 50% business rates relief and putting the brakes on bill increases by freezing the business rates multiplier – worth £4.6 billion over the next five years.’

For desperate families who may lose out on a place in a hospice as a result of the financial crises, this response will do little to alleviate their worries.

‘Although a hospice – by definition – is a place of death, the sense of peace and serenity was one that I will always remember and cherish,’ Cindy Collick tells Metro.co.uk.

Cindy’s husband Jeremy was sadly diagnosed with stage 4 liver cancer in 2018. He deteriorated quickly and spent his final days in Peace Hospice in Watford.

‘As far as the entire staff were concerned it was not just Jeremy that needed their care, but as his family we were looked after too,’ says Cindy. ‘Any questions that we had were answered and we were allowed to sleep there and were given a room so that we could rest when needed.

‘Hospice staff are not just nurses – they are angels in nurses uniforms. They give so much comfort to so many.

‘Hospice spaces are so limited and there needs to be many more. We were lucky that we got a space – so many do not. Jeremy’s death would have been a much harder experience for all of us had it happened in a hospital setting.

‘Although it was not what he wanted, it was – despite the emotions surrounding the death of a loved one – the best place in the world that he could have ended his days.

‘No words of mine can truly express my gratitude for what Peace Hospice did for my husband and the entire family. I will forever be in their debt.’

The Life and Death Podcast – produced by Ashgate Hospice – explores frank and honest conversations around death and what ‘dying well’ really means.

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