In September, I found myself back in a hell that was all too familiar. My mum was in a hospice, dying of cancer, while I camped at her bedside or paced the halls desperately. Four years earlier – almost to the day – I had been in the exact same position with my dad after his cancer diagnosis became terminal. How was this happening to us again? And so soon? It felt like the past had looped back on itself, trapping me in a recurring nightmare.
And yet something fundamental had changed in the short period between my parents’ deaths – the quality of end-of-life care has undergone a shocking and rapid decline. It is a growing crisis that I have had the misfortune of witnessing first-hand.
There are so many similarities between my parents’ illnesses. Both of them were young and had been otherwise healthy when they were diagnosed, they both declined quickly, and they were both adamant that they wanted to spend their final days in a hospice. It was crucial to them that the responsibility of caring didn’t fall to my sister and I. But despite having such similar intentions, their experiences were completely different.
For Mum, palliative care was fraught and stressful. There was a tense and time-pressured battle to get her a bed, and when we finally arrived at the North West hospice, she was given a bed on a shared ward – which felt no different to a hospital. It was hard to talk to each other with other patients close by, TVs blaring, and visitors running in and out. All we had was a paper curtain to pull around the bed.
I called the hospice every night and every morning before our visit, but on many occasions the phone rang out, or there was nobody available to give us an update. One evening, Mum messaged me asking for help – she couldn’t reach her call button in the dark and nobody had been to check on her or help her get ready for bed. The thought of her alone, unable to call for help, broke something in me permanently. I rang the front desk in tears and was met with profuse apologies and promises.
None of these failings are the fault of the medical professionals. Throughout my mum’s care, I had the clear impression that everyone was trying their best amid increasingly difficult circumstances. I had one conversation with a doctor who was mortified that they were unable to provide my mum with a private room. She told me their hands were tied. All of the hospices in the surrounding area were in the same boat: there were no beds.
It’s a similar picture nationwide: long waits and complicated processes to get a hospice bed before patients die, staffing shortages, and discharge delays from hospitals for those who prefer to die at home. The reasons are multifaceted. The population is expanding and people are surviving longer with illness; care needs are becoming more complicated, more prolonged. A projected 130,000 more people will die every year by 2040 than do today.
But this doesn’t fully explain the speed of the decline I have witnessed in the last few years. The sharp end of the crisis we are seeing today is caused by a lack of funding.
With the cost of care soaring, the current funding model – where only about a third of financial support comes from the NHS and central government – has left hospices at breaking point. Many institutions are increasingly relying on charity donations to make up the shortfall. It isn’t enough. The latest projection for the total deficit of the hospice sector for the year ending March 2025 is £60m, and one in five hospices are facing cuts to vital services.
The crisis is set to be explored in ITV’s Tonight. Hosted by journalist Daniel Hewitt – whose mum received hospice care in 2014 – the programme will ask what is needed to keep care alive. One hospice they visit in Lichfield has had to make 21 staff redundant this month. Another in Liverpool had to raise £6.4m in 30 days to keep their doors open. Hospice UK told the Tonight programme that the sector needs at least £110m in the next month to avoid further job losses and cuts to services.
In 2020 – despite the complications of Covid, restricted visiting and PPE – the hospice where my dad spent his final days felt like an oasis of calm. It was witnessing this experience that made my mum so certain of what she wanted. In the face of a dire prognosis, she was brave and pragmatic. She visited local hospices and made a clear plan of her wishes, noting them all carefully with her GP. She did everything “right”, and yet she was still let down when it mattered the most. I can only imagine the stress and uncertainty facing patients even half as prepared as my mother was.
My fear is that if funding for hospices is not urgently reviewed and immediately protected from further cuts, more people will die without dignity, in pain and in circumstances they didn’t plan for.
You don’t get a do-over when it comes to someone’s death. Getting it wrong leaves lasting scars on those of us left behind – guilt, confusion and bitter regret compounds intolerably with the inevitable grief of loss. I’m so grateful I got to be with my parents when they died. I got to hold their hands and comfort them. I got to say goodbye. That is the most important thing. But the circumstances around our final goodbyes matter too. People at the end of their lives deserve the best possible care right up until their final breath. Anything short of this is a monumental failure.
Natalie Morris is the author of Mixed/Other: Explorations of Multiraciality in Modern Britain
Keeping Care Alive: Hospices in Crisis? airs on ITV1 at 8.30pm on 28 November
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