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Jenny Wilson, deputy CEO at Eden Valley Hospice, gives us an insight into the extraordinary work of the hospice nurse.

Nurses don’t just heal us they also help us die with dignity. Jenny Wilson, deputy CEO at Eden Valley Hospice, gives us an insight into the extraordinary work of the hospice nurse.

“Do you know, everybody stays with us; everybody you look after,” says Jenny.

“Every person who dies takes a piece of my soul with them. And I have to find ways to rebuild that soul. They all matter.” Jenny Wilson has been a specialist palliative care nurse for more than 20 years, dedicating her professional life to looking after people who are terminally ill.

She joined Eden Valley Hospice 18 months ago as deputy chief executive and head of clinical services. She leads a team of more than 20 nurses and 20 healthcare assistants, as well as the hospice Family Support Team. Their focus is to do everything in their power to ease their patients through the final journey of life Jenny calls it “the absolute essence of good care”.

This care demands not just medical expertise, in pain relief for example, but an extraordinary human input from staff whose most powerful tools are among life’s most ephemeral qualities – friendship, wisdom, understanding, making someone feel safe.

Jenny says: “In palliative care there aren’t lots of fancy pieces of equipment.The most important piece of equipment is ourselves. And so it is important that we develop advanced communication skills.

“We need the ability to listen to what a person needs us to hear, and the ability to develop trust.” 

The ratio of nurses to patients is much higher in the hospice than in hospitals. Eden Valley Hospice has eight adult inpatient single rooms with en- suite facilities. Each nurse looks after two or three patients at a time, with a healthcare assistant to help them. The hospice takes patients facing more complex symptoms or situations, which require the more intensive input of specialists, says Jenny. 

“It might be a mum who is unlucky enough to have cancer in her late thirties. She might have a couple of young children from a second relationship and might have teenage children from a previous relationship, but who still need parenting.She might have symptoms like sickliness, pain and fatigue. 

“Or it might be someone who needs the help of two or three nurses with changing position,” she says. 

Some spend time at the hospice so the team can get their symptoms under control, but want to be at home at the end of their life. “We will take people in the last year to six months of life for adults. We provide end of life care for people who feel they don’t want to be at home or in a care home at the end of their life,” explains Jenny. 

“It could be because practically it’s not possible, or emotionally they are scared or isolated, or because of the challenges they have from their symptoms.” Inpatients usually stay at the hospice for a relatively short time, from a few days to one or two weeks.

There isn’t a long waiting list – patients referred to the hospice are usually able to be admitted within 24 to 48 hours, says Jenny. The team has a short time to build a bond of trust and understanding with patients when they arrive.

“Whilst you are assisting them with a wash or helping them eat some food or have a drink or changing their position so their skin doesn’t become sore, because you are doing something intimate with them that might be the time they open up and say they are worried about what will happen to their dog, or they have had a troubled relationship with a sibling and they want to put that to rest,” says Jenny.

The hospice team, which includes a family support team, spiritual care volunteers and social workers, will do what they can to help. No detail is too small. If a patient feels sick when they smell their food cooking, they might be placed in a room distant from the kitchen. When a patient is turned over, their family photos will be moved to the other side of the bed, just in case they open their eyes.

“If someone is talking to me about pain, I would ask about that but also what other things make you unhappy,” says Jenny. “Someone once said to me, I have huge amounts of pain. I asked what makes it better, and they said my grandchildren visiting because I get so absorbed in them that I’m able to forget the pain.”

The whole team communicates in multi-disciplinary meetings so that whenever a patient mentions something is important to them, everyone will know and be able to act on it. “We had one patient who was very connected to nature and the environment. Her ideal would have been to die in a meadow. It was really important for her to have the window open,” says Jenny. “It was difficult for her to speak, and it was absolutely vital that we reassured her that we knew that and would support it. We communicated her wish and she died at home with the window open.” Jenny was on shift last year when a patient was admitted who tested positive for Covid.

“Visiting had been difficult in that first wave,” she says. “The gentleman was able to sip fluids. I asked, do you want a cup of tea? He sort of nodded. But he couldn’t possibly tell me how he liked his
tea. So, I rang his daughter and asked.

“We try always to find out what are the things that matter to this person, so we can make them feel special and supported.”
She adds: “Visiting restrictions under Covid have been one of our biggest ethical dilemmas. Normally we would have open visiting,
with loved ones, cats, dogs…”

During Covid, one patient wanted to see his home for the last time. “We provided an iPad and his partner did a virtual tour so he could see their home with the cats and the dogs for the last time,” says Jenny.

Another patient was wrapped up warm and taken outside to meet their dog. The Salvation Army band came to play for a patient who was a member, and weddings are arranged, often at short notice. A patient who loved the outdoors was moved outside into the hospice courtyard in their bed, so they were able to feel the breeze and the sunshine and hear the birdsong.

“We frequently move beds outside if that’s what people want,” says Jenny. How do palliative care nurses manage the emotional demands of their work? Jenny points to support from the team plus a good home-work balance.

“Witnessing somebody else have their life shortened and the loss that their family feel will always be sad,” she says.

“I have to recognise that it’s not within my sphere of influence to stop that sadness, or that person from losing their life. “Where I get my resilience from is, what can I do as an individual to make that journey and process as supported as it can be?

“If I’m able to give a child a handprint of their mum so when they are 18 they can see how big their mum’s hand was compared to theirs, or a lock of hair and they can say, Oh that’s the same colour as mine, or
a video where a parent has sent a message for their 18th – that takes me from sadness to acceptance of mortality and a recognition that what I do can make a difference,” she says.

“That’s what keeps me doing it and stops that overwhelming sadness that stops you being able to function.” Palliative care nursing might be among the most emotionally challenging, but Jenny says there is also happiness. “This is a really happy place to be. The team here, their can-do attitude and making a difference to someone’s life, is huge. “I went down to the children’s unit recently and they’d had such a wonderful day with the child they were looking after.

It was a fun place to be that day and there were smiles on everyone’s face and the parents could see that their child had had a fun day. “It’s about making a difference and making a moment for that person. That’s where the joy comes from. It’s not a sad place to work, though I can understand why people would think so.” Jenny remembers the patient who inspired her to go into palliative care. She was a student when this lady was transferred to her care from a hospital.

“She was struggling to eat and drink, and it was clear she hadn’t had any mouth care for what might have been days,” says Jenny. “That day I kept coming back to her and doing 10 minutes mouth care
to try and get her much more comfortable. At the end of it she was able to enjoy an iced glass of water with little sips - and taste it. She gave me a thumbs up. “It taught me that in palliative care the small things are the big things. It’s because of that amount of detail that you can improve a person’s quality of life. That’s what brought me into palliative care.”

How to help the appeal:

  • If you already have a will you can ask your solicitor to ensure it includes a donation to the hospice
  • If you have yet to organise a Will now is the perfect time to make one and include Eden Valley Hospice as a beneficiary. You can either make a donation for a specific amount in your will or stipulate a percentage of your estate.
  • Find out more by contacting Stephanie Lacaille-Burton, Head of Marketing and Income Generation, email stephanie.lacaille-burton@edenvalleyhospice.org or call us on 01228 810801 for further information.

Find out more at www.edenvalleyhospice.org/support-us/help-our-hospice