When compassion comes calling

Communications Copywriter Jackie Butler jumps in the deep end on the road with St Luke’s at home

If you want to learn about the fantastic care delivered day in and day out by St Luke’s, one of the best places to start has to be out on the frontline with our at home nursing teams.

Like many people, I’d been under the impression that St Luke’s was all about the wonderful in-patient unit at Turnchapel. I knew that my friend’s husband had been visited at his own house – where he wanted to take his final days – but it was still a surprise to discover that more than half the care delivered by St Luke’s happens out in the community.

Eager to find out more and part of my induction to St Luke’s, I recently had the privilege of accompanying members of our dedicated at home team on daily rounds in and around Plymouth to witness first-hand what a huge difference this treasured service makes to patients who are facing death, and their families.

For someone like me who isn’t used to being around very poorly people at the end of their lives, this was like jumping in at the deep end and I admit I was a bit nervous. But the reassuring presence of Clinical Nurse Specialist Sally, and Urgent Care team nurse Natasha and health care assistant Claire, put me at ease straight away.

I could imagine the relief you might feel as a patient, a concerned relative or a fellow carer, when these veritable superwomen ring the doorbell. It’s immediately clear that their entire focus is on making things as comfortable as they can in every sense, minimising intrusion, maximising support, easing pain, maintaining people’s dignity – often in difficult circumstances – and helping plan for the best death possible.

Their respectful and unhurried presence suggests they have all the time in the world for each individual and that nothing is too much trouble. Intuitive, gentle and knowledgeable, it was fascinating to see each of them instinctively register the tiniest changes in a patient’s expression or demeanour and then go the extra mile to respond with a practical solution.

I was surprised by the huge patch the at home team covers – some 750 square miles stretching right across the city and across into rural West Devon and remote parts of Dartmoor, as well as down into the South Hams and the coast. And some patients are visited by St Luke’s up to three times a day.

ROUND ONE Sally – Clinical Nurse Specialist

Sally, who retrained as a nurse after a long career in the police force, usually travels solo but certainly made a delightful companion as I tagged along on her rounds for the day. Her intense passion for her job certainly shone brightly.

As a St Luke’s Clinical Nurse Specialist, she has particular skills in managing patients’ complex symptoms and pain, advising on medication options and other aids to make things easier. Her day involves weighing up care and treatment options and encouraging the most beneficial in each case. Like the rest of the at home team, she takes a sharp and holistic view of each patient and their quality of life, and her calls are scheduled to reflect each situation.

Sally’s upbeat manner disguises how acutely tuned in she is to every scenario she’s faced with, including the health and wellbeing of the individuals caring for a patient, whether that is family members, nursing home staff, district nurses, St Luke’s own at home team or a combination of those.

Uppermost in her mind is recognising people’s needs and acknowledging what they are going through. “It’s important to tell people you really understand,” said Sally.

Answers to the casually chatty but clever questions she asks provide the information she needs to make the right judgments about a patient’s condition and the best path to follow. Faced with a man in pain but reluctant to try a stronger painkilling solution, I noted her gentle powers of persuasion in action as she coaxed not only his agreement to “just give it a try”, but a rare little smile as well.

Minutes after checking in on a lady in a local nursing home, she was back in her car and straight on the phone to the woman’s daughter to reassure her that mum was comfortable and without pain, but very close to the end of life.

I also witnessed as she went above and beyond to make sure a patient who was no longer able to take his medication orally had a syringe pump driver and specific drugs prescribed by the GP, all up and running the very same day to avoid him suffering unnecessarily in his final days at home, surrounded by his loved ones.

“You get a real high from getting it right for the family,” she said.

Making notes during and after each visit, Sally had a mountain of paperwork to complete before calling it a day, filing detailed reports on the patients she’d seen so St Luke’s at home team, and other concerned medical professionals, had a detailed view of her observations and care advice.

While she and her fellow Clinical Nurse Specialists are like the expert flying squad of the service, the consistent daily personal care of patients is the domain of the Urgent Care Team, who work in pairs and can clock up hundreds of miles on a 12.5-hour shift, travelling from patient to patient.

ROUND TWO – Claire and Natasha

Nurse Natasha describes the palliative care she and her Urgent Care Team colleagues deliver as they approach death as “a big, warm hug” and that spirit was ever-present as I watched her and health care assistant Claire in action together in people’s homes.

“We are a very passionate team. We want people to have the very best quality care. At St Luke’s if you need to sort someone in crisis then you can spend the time. Someone else is always ready to help,” said Natasha.

Claire added: “We are not trying to make anybody better, just pain-free and comfortable. We specialise in dying and death.”

The day I joined them began with a handover meeting at Turnchapel discussing the patients they would see that morning, their state of health, their needs, issues with medication, and any other agencies involved, like social care or district nurses.

Sitting in the back of one of St Luke’s bright branded vehicles, I experienced a sense of pride as Claire negotiated the traffic to drive us to the first call of the day.  It’s fair to say that health care assistants are the lifeblood of the service and the main faces of St Luke’s care out in the community. As a nurse Natasha is more often taking an overview of patients, assessing new referrals and giving advice on care, but she clearly loves the hands-on aspects of the job, and it was awe-inspiring to watch her and Claire working seamlessly together.

Our first call was to a very weak elderly woman in the final stages of cancer, dozing in the living room of her house where she lived with her husband. Asking permission at every stage, and giving constant reassurance, Claire and Natasha very carefully raised her hospital bed to a manageable height and position. They slowly stripped back her blankets, one by one, making sure she didn’t feel cold, and gave her the gentlest of washes to freshen her up, while watching for signs of pain, discomfort and noting any deterioration since the day before.

They dealt with her catheter bag, moisturised her feet, brushed her hair and teeth. They changed her bedding and nightclothes and propped up her up with pillows so she could see out the window to the garden. When they left the house she was clean, snug and dozing again and they – or another St Luke’s UC team – would be back to do it all again in the early evening.  I sensed it wasn’t going to be long.

 

Natasha and Claire repeated that level of kindness and care on each of their visits, depending on the individual and their circumstances. En route to the next patient, Claire explained a bit more about what is happening quietly under the surface when they are in someone’s home.

“You read the whole situation holistically. We soak it all up. Quite often it’s the relatives who are struggling the most. Even the dog’s behaviour can give you clues about the situation when you walk in the door,” she said. “We look for all the signs that someone is actively dying. We learn our skills and we are out there doing it. The person you are working with, you just give them a little look and they know what you are thinking.”

When death does arrive, St Luke’s role doesn’t stop, and it was humbling to hear how Claire and her fellow HCAs have a particularly poignant and challenging role to play.

“Ideally everyone would die in their sleep with someone holding their hand. But you can give them the dignity after, and it’s such a privilege to provide that care after death, for the family and the patient themselves,” she said. “We’re there for the practicalities and to talk about what happened.

“Care after death is really important and I like to do it as much as looking after someone when they are alive. To have them looking beautiful or handsome and put on their best clothes, give them a shave, some make up or perfume. It’s the last memory people are going to have of their loved one before they have to let them go, so it’s really important. You like to know that you have done your best.”

After three patients, a quick lunch, report writing and what they call a “huddle” with colleagues, Natasha and Claire were heading back out late afternoon with another set of visits on their list, maybe the same patients, maybe different ones. Every day is different for them.

I retired to my desk to reflect on my experiences with Sally, Claire and Natasha, blown away by the extraordinary compassion and skilled care I’d seen in action on the frontline and so grateful for the opportunity.  There’s still so much more for me to learn about St Luke’s, but I now have a much better insight into why we’re all here, working together to keep these incredible services running.