The kind of death you experience has become a postcode lottery
The only guarantee in life, as the saying goes, is death. But how we die, and whether we enjoy the privilege of a “good death,” has no certainty at all. Across the UK, the experience of our final weeks has increasingly become a postcode lottery, influenced by location, condition, age, ethnicity and wealth.
One of the underreported quirks of the palliative care system is its reliance on charitable donations, with only a small proportion of funding provided directly by government. The hospice movement was not established until the mid-1950s, meaning the sector effectively missed the boat for being fully integrated within the National Health Service when it was established in 1948. In 2022, that enduring dynamic means hospice and community nurses are often paid less than those in comparable NHS roles, creating an inevitable shortage.
St Gemma’s Hospice in Leeds has capacity for 32 patients, but due to a nursing shortage this has been reduced to 15. In nearby Bradford, the Marie Curie hospice has had to pause inpatient admissions entirely. That squeeze is replicated across community palliative care services, where people approaching the end of their life can be cared for at home and hopefully spared a cycle of hospital admissions.
With private rooms looking out into the hospice gardens, patients lucky enough to be admitted into these facilities have ensuite bathrooms and the option for families to stay overnight while care is provided by a round-the-clock team. That level of in-house support, or the provision of proper palliative care at home, brings comfort to relatives who can return to being a partner, parent, son or daughter rather than caregiver.
I really felt that the safety net was there, but when it came to it, there was a great big hole
But when the safety net frays, the impact on families can be catastrophic. Tracey Bennett’s father Michael was given a terminal cancer diagnosis in December 2020. Having been told his condition was not treatable, the family say they felt as if doctor could not get them out of the door fast enough, failing to provide them with any information about what to expect, or the support available.
A former IT manager, Michael put together some USBs of his favourite films should he end up being admitted to a hospice, but it was a question that was never asked, and an opportunity never offered. Instead, the family were visited by a carousel of different district nurses, with just two visits from a palliative care team in his final weeks.
One evening in late January, after a period of deterioration, Michael collapsed. Paramedics who arrived provided as much care and support as possible while recognising a needless A&E admission was not the best option. Instead, Tracey was forced to battle for hours to persuade the district nurses and a doctor to visit. They checked his pulse and blood pressure and agreed he could remain at home.
Later that night, Michael passed away in his living room. The district nurses were again called but refused to visit when they heard he was not breathing. Declaring death, they said, was not in their job description.
“We’d been promised that we’d get help at the end. They told us ‘Don’t worry, we will help with that.’ I really felt that the safety net was there. But when it came to it, there was a great big hole,” Tracey says.
The impact on the family from Michael’s death has been significant and Tracey’s voice cracks with emotion as she describes how she feels she has let her father down because he wasn’t able to have a dignified death.
“I have to live with that, because I didn’t do enough, because the people who should have been there for me and Dad weren’t. I wouldn’t wish that on my worst enemy. I really wouldn’t, because it is just wrong.”
Without a proper care plan, the visits Michael received focused on his immediate medical needs rather than addressing the concerns of the family or noticing subtle changes in his condition.
“This shouldn’t be up to charities, there should be a standard. And it shouldn’t be that some people have to strive to reach that basic standard that other people have access to,” Tracey adds.
According to a recent study by King’s College London, only a quarter of the new Integrated Care Systems – set to replace the current clinical commissioning groups – have identified palliative or end-of-life care as a priority. And campaign groups, alongside their parliamentary allies, have begun a battle to press for palliative care to be explicitly included in the new Health and Care Bill, requiring a statutory obligation for end-of-life care to be provided alongside other basic medical services.
Sam Royston, director of policy and research at Marie Curie, says putting palliative care on the same level as maternity and dental services would help address regional imbalances which exist across the country, and help change attitudes among other health staff.
“It’s understandable they have a focus on treatment because they see their role as being about treating, but palliative care as an approach is not about saying quality of life should happen at the cost of treatment... but [that] we need to have more of a focus on wellbeing.”
For staff working in hospices, the low status of palliative care is a frustration compounded by the experiences of patients seeking to access their services. Emily Holdsworth, a palliative care doctor working at St Gemma’s, says that in her six months working there she has seen only a handful of patients who didn’t want hospice care. For those able to take advantage of it, the opportunity to receive expert palliative care provides untold comfort to them and their families.
“The overarching reaction when you admit someone into the hospice is of absolute relief – both for the patient and the family as well,” she says.
“We provide a much more personalised experience. We get people when they are admitted to tell us what kind of music they like, so we can get that on for them. If people have a birthday, then the kitchen knows about it and they make a cake with the patient’s name on it. It’s totally holistic. It’s just looking at that person and where they are in their life and who else is important to them.”
Among those with loved ones who have experienced palliative care, there is a sense that policymakers have a squeamishness around talking about the process of dying, sustained by a false comfort that it won’t happen to them and their families. Those that continue to speak out are forced to relive the trauma of their experience, driven by a hope that they can help change the system that failed a loved one who can no longer advocate for themselves. As Tracey observes, “dead people don’t complain”.
But with an increasingly aging population, and a constant strain on health and social care, it is an issue all of us are likely to confront at some stage in our lives, and when we do, we expect the support to be there.
Above all, Tracey wants those in charge to face those difficult questions head on, to put themselves in her shoes, and to ensure other families do not suffer the same outcome.
“Imagine it’s your mum, or your dad, or your child,” she says. “And there is nobody there, because that is what happened. Put yourself in that position where they are drowning and you don’t know what to do, nobody’s coming. Nobody’s going to help you.
“If they think about that, then maybe they’ll do something.”
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