Lesley has spent 40 years as a nurse, the last 14 of them in palliative care with ellenor. She has been in countless homes, sat at countless bedsides, and guided countless families through the hardest conversations of their lives.
As a Palliative Care Clinical Nurse Specialist, her job is not what many imagine. She rarely works on a ward. Most of her patients are cared for in their own homes. And her work is not just about dying.
“it’s not about dying, but about living well, planning ahead, and ensuring families can find peace in the hardest of moments. That’s the lesson she has carried through four decades of care – and it’s the message at the heart of this year’s Hospice Care Week: hospice care is more than you think.
“I’ve been in community nursing since 1988,” Lesley begins, settling into her armchair for the interview. “14 years ago, I decided I need a change, and thought – why not give ellenor a go? I came in as a very naive palliative nurse specialist and had the biggest learning curve I’ve ever had. Today, I’m still here – and I still love it.”
Lesley’s role at ellenor – a hospice charity that provides palliative and end-of-life care to patients of all ages across North Kent and Bexley, both from its inpatient ward and the patients’ own homes– is rooted in expertise, empathy and an acute understanding of what it means to live with a life-limiting condition.
Her work is one of quiet courage, that defies the stereotypes and cliched lenses society so often views hospice care through. As one example, Lesley does her work almost entirely from her patients’ homes - contrasting starkly with the stereotype of the hospice as a ward-bound environment. As another example, Lesley’s work isn’t, as most misconceptions would have it, about death and dying. It’s actually about life: not how to prolong it or extend it at all costs, but how to maximise its quality - and help patients enjoy it to the full.
Lesley is the first to acknowledge these taboos - and that part of her role in palliative care involves navigating emotions that society often prefers to ignore. “There’s a lot of focus on birth, but not on death,” she says. “Why don’t we talk about death, as a society? Because it’s negative. We don’t like to look at it, or think about it, because it makes us uncomfortable. We prefer to keep a ‘stiff upper lip.’”
She pauses, reflecting. “At the beginning of our lives, we make birth plans: we know whether we want a water bath, or a midwife, or if we want to give birth at home or in a hospital. Everyone’s so excited about this new life coming into the world that they want to talk about it, to celebrate it. But we also need to give our best for the people leaving this world – because eventually, it’s something all of us will do.”
To Lesley, preparing for death is an act as practical and compassionate as it is vital. “A good death? Yes – though it sounds counter-intuitive, such a thing is possible. To me, a ‘good death’ is being at peace. It’s having your family around and knowing that everyone is open and honest about what’s happening. I had a patient who changed his mind about dying in the hospice. He didn’t know how to tell his wife, but once we discussed it, he got his preferred place of death at home, surrounded by his family. There was no uncertainty.”
Sometimes, Lesley acknowledges with a chuckle, her role serves up some strange requests from patients. One patient’s funeral request involved being put in a firework and sent into space, and another wanted their cat to stay with them when they moved onto the ward.
Other times, the work demands navigating more complex situations.
“I had a case where a lady was brought home from hospital at the weekend, fully aware that doctors could do no more for her and that she was entering the final days of her life. We spoke about the DNR [Do not resuscitate] form that should have been sent home with her, but her husband denied having this. He didn’t understand or accept it. She died that night. He had to call an ambulance, who attempted resuscitation. It was distressing for everyone – that’s not a good death.”
Examples like these illustrate why, when a patient is facing end-of-life, it’s crucial that they work with their families to ensure that proper Advance Care Planning (ACP) is in place ahead of time. This ethos is at the heart of Palliative Care Week UK’s central message – Living for Today, Planning for Tomorrow – and reflects the crucial role that planning plays in enabling patients to live well – then to pass away peacefully and painlessly.
This ideal isn’t just one Lesley practices in her profession – it’s one she stands by in her personal life, too.
