WITH YOU TO THE END OF YOUR DAYS

How you spend your days is, after all how you spend your life, wrote American author Annie Dillard. Yet how we spend our final days is not always how we’d choose.

Phil Green, specialist palliative care nurse

Choosing how and where they want to die is important to people with a terminal diagnosis.

Specialist palliative care nurse Phil Green believes the care we receive at the end of our lives is crucial not only for a dignified and peaceful death, but for those left behind.

“Choosing how and where they want to die is important to people with a terminal diagnosis. When promises aren’t kept it can also have a huge knock on effect for those left.”

Phil is part of the palliative care team that supports families who have been told their loved one is on their final journey. Their lives have often been preoccupied with hospitals and medical interventions aimed at making them better. Then suddenly they’re faced with the unthinkable. It can be tough.

He and his colleagues can become a lifeline for families and colleagues as they guide patients on a journey that can require skilled psychological support, as well as pain and symptom control.

Phil’s passion for quality in palliative care came as a student more than two decades ago and was strengthened during his time as

a district nurse, as he realised the importance of looking after the whole person, not just their medical needs.

His desire to know the person and their family is genuine. “I want to find out about them so we can have proper chats about things they enjoy; their football team, work or hobbies.

“People are very different, they have their own beliefs. It’s important to me that I get the dynamic right from the start. I can then ask what they’d like to achieve so I can help them towards their personal ‘pot of gold’. It could be something small, like getting out into the garden, or to manage the pain control or symptoms.

“It could be how and where they want to end their life; if that’s where they’re at we’ll have the discussion, but it’s also about how they want to live the life they have.”

Phil and his team are specialists, offering solutions in complex situations, and working closely with district nurses and psychologists, to care for the patient’s mental and aswell as physical wellbeing.

It’s challenging. “You’re constantly thinking how to make someone’s life better. You couldn’t do this job if you didn’t have that approach. I always say we give someone a ‘good listening to.’”

THE TEAM HAS CARRIED ON VISITING PATIENTS THROUGHOUT THE PANDEMIC

“It’s been hard on everyone but especially for someone who doesn’t have a long life ahead of them; they need a lot of psychological support,”says Phil. “When families weren’t able to visit, patients would turn to us for support.”

Having to wear personal protective equipment is necessary but has drawbacks in a role that relies heavily on empathy.

“I use non verbal communication to reach out to someone – a look, a touch, the stroking of a hand; it’s how I break down barriers. It’s hard to do that wearing a mask and gloves.”

The team involves everyone in discussions whether about prognosis, care planning or last wishes. “We have discussions, but how far we go is up to the person. They set the parameters, and then we guide each other down the path they choose.” says Phil.

A BIG QUESTION IS ‘HOW LONG HAVE I GOT?

“Some people want to know at the outset, for others it may be too soon, we take our lead from the person. I recently visited a lady diagnosed with a brain tumour. She said “I know what’s happening; I just don’t want to talk about it.” I told her ‘you know where I am when you do want to talk’. That was enough for her at that moment.

“Another family desperately wanted to keep their dad at home in his final weeks but were concerned that he couldn’t swallow medication, so I organised for support so their wishes could be carried out. We only get one chance to carry out people’s wishes – it’s essential we get it right for the person, and so the memories are the best they can be for those left behind.”

Ref: Annie Dillard: The Writing Life (1989).

I DIDN'T WANT MY HUSBAND TO DIE AMONG STRANGERS

When Jen Wharton realised her husband Frank was losing his battle with Parkinson’s disease, her first thought was that he should spend his final moments at home.

Frank had lived with Parkinson’s for 13 years. He’d suffered strokes which left him with epilepsy, and had spent long periods in hospital. Jan was grateful for the care he’d received from Aintree Hospital, but as he became more unwell, she was sure that she didn’t want him to end his life in hospital. She welcomed an offer by Frank’s Parkinson’s nurse to have palliative care at home.

“Frank was weak and frail. I knew we were heading towards the end. He was a real family man, his family and his close friends were all he needed. All I could think was ‘I don’t want him to die amongst strangers’.

Frank Wharton

Palliative care specialist nurse Phil Green became the family’s link to Mersey Care and other services.

Jen recalls: “Your loved one means so much; you don’t want them to be just a part of someone’s job. Phil spoke kind words, but he also listened and that was very important to us. We didn’t have to think of anything, he took care of it all.”

While she misses Frank terribly Jen says the memories of his final weeks give her comfort.

“Those last memories stay with you. We knew that people were praying for us and Frank’s last weeks were more peaceful than at any other time throughout his illness. We knew we could call Phil or one of the district nurses; there was always someone there if we were in need. I felt that we were upheld in a basket of care.

Their support meant that Frank could end his life peacefully, at home, with his family near him.

We really did get that extra support that we needed and I will always be grateful for the palliative care team; their support meant that Frank could end his life peacefully, at home, with his family near him.”