The nurses in purple scrubs
As the pressures of winter illnesses put more strain on already overstretched hospital services, St Luke’s copywriter Jackie Butler meets the dedicated St Luke’s team providing expert end of life support for patients and staff at Derriford.
Day in and day out, NHS clinical staff at University Hospital Plymouth are working tirelessly to save lives and make sick people better. Sadly, doctors must sometimes break the news that nothing more can be done to prolong someone’s life and that a person has only weeks, or even days, left to live.
That’s when the St Luke’s at Derriford team steps in to wrap a blanket of compassion and expertise around a patient, aiming to make sure their remaining time can be lived as fully as possible, with dignity and minimal pain.
Unless you’ve encountered them first hand, most people don’t realise that St Luke’s has a permanent and regular presence at the hospital, with highly trained doctors, nurses and admin staff on duty seven days a week, working alongside NHS staff, and having a major impact on the care of around 100 patients a month.
Based on Level 8, alongside Brent Ward, the St Luke’s doctors and nurses visit adult patients anywhere in the hospital who have a progressive, life-limiting illness and a terminal diagnosis, and there are as many as four or five new referrals daily. Their priority is to offer quick and efficient advice on how best to manage someone’s symptoms and provide the most appropriate care, as well as to help determine the best place – often preferably not in hospital – for a patient to spend their final months, weeks or days.
The team are also there to offer emotional and social support to patients’ families and carers, as well as to share their knowledge and compassion with Derriford’s own nurses and doctors who can find it upsetting and challenging when, despite their best efforts, death becomes inevitable.
As gatekeepers for the hospice as a whole, the St Luke’s hospital team liaises closely with the organisation’s at home and Turnchapel services to find the right solution for each individual. If it’s possible for someone to leave hospital, the team help Derriford’s own complex discharge service arrange their transfer, often recommending them for St Luke’s end of life care in the community or, for those with the most complicated needs, seek admission to the specialist unit if it’s appropriate.
I was honoured recently to join St Luke’s at Derriford Nurse Consultant Martin Thomas and Clinical Nurse Specialist Julie Ayers for what can’t really be described as a typical shift because every single day is different, with its own unique challenges and crucial decisions to be made.
“We have no idea who is coming through the door each day. We try to see urgent cases within 24 hours and if they have very bad pain or other symptoms, we try to see them the same day,” said Julie, who is clearly passionate about her own work as well as educating others.
“We are in a unique and privileged position here advising throughout the hospital. It is all about maintaining good relationships and being part of one big team. We also do a lot of education and believe strongly in encouraging people to use the taboo ‘D’ words – death and dying. It’s about getting the right messages across.
“The earlier we get involved with patients who are palliative, the more they can plan for death and how they are going to spend their remaining time. It’s a privileged role, sorting people’s pain out and stopping them from feeling rubbish.
“We have cover here seven days a week, from 8.30am through to 4.30pm for urgent cases and we always tell hospital staff they can ring through to the specialist unit at Turnchapel for advice out of hours.”
Each day is different but there are regular routines, and the morning begins with a briefing meeting. The busy team has the equivalent of 6.5 full-time nurses, led by Martin, and two full-time and one part-time doctor, headed by Consultant Doctor Doug Hooper, plus a vital clinical administrator who keeps the whole machine rolling. There are always two or three student doctors too, gaining important experience as part of their training.
They meet on camera in a virtual online room – a practical move introduced during the peak of Covid because the team are squirrelled away in three tiny rooms that aren’t big enough for a socially distanced face to face get together.
There’s just one thing on the agenda and that’s the welfare of the day’s list of patients, more than 25 on the day I was there, including several new referrals from various parts of the hospital.
Each individual’s circumstances are discussed in detail – who they are, how unwell they are, whether their condition is stable or deteriorating, whether they have been seen by a member of the team and when, what medications are being used to manage their symptoms and whether that could be improved, what their family situation is and when or whether they might be able to be discharged.
Decisions are made collectively about which patients need to be seen urgently that day and which member of the team will visit them on the wards, always prioritising continuity of care and quickly building a relationship of trust with patients and their loved ones.
Individual cases can be enormously complex. One person had been fighting cancer for years but was now reaching the end. Chemotherapy had initially helped to control their cancer, then the disease had now spread and was no longer treatable, and a chest infection was also adding to their discomfort. They had been brought into hospital because they couldn’t cope at home and now needed to look at what was the best course of action.
It’s a thorough and painstaking meeting that goes on for more than an hour and at the end everyone has their allotted tasks, although in such an unpredictable environment they are always prepared for the unexpected.
For today Julie’s role is triaging referred patients as requests come in from around the hospital. Meanwhile, Martin takes responsibility to visit several patients on the list during the late morning and early afternoon, with important meetings and briefings to fit in too.
He has been familiar with the medical world since he was a child. Martin grew up listening to his nurse mother talk about her work and he was drawn into nursing himself in the late 1980s at a time when strong and positive male role models were being established on TV, notably Charlie Fairhead (Derek Thompson) and Ash (Patrick Robinson) in medical drama Casualty.
“I spent 15 years working on the haematology ward at Derriford, becoming a charge nurse and then a matron, but I was frustrated because I ended up sitting at a desk with little patient contact,” he said. “On a course I sat with the then clinical director at St Luke’s and she asked me if I had thought about being a palliative care nurse. I applied for a job working in the community and fortunately they took a punt on me.”
Martin cared for patients as part of the community urgent care team for 17 years. After being asked to step in to help the St Luke’s hospital team for a couple of months, he got the job to head the department in 2019.
“Our job is about deciding who needs us most and then where do we go from here. If it involves complex symptom management or psychosocial planning, then people will be referred to us to take on management of their care. If they are still under a surgeon or medic, we will work alongside to give support and good advice,” he explained.
“The average stay on our caseload is six days. Patients are either discharged into the community, or sadly die in hospital. While they are in St Luke’s sights the team will do everything they can to support them and their family members, and try to find the best course of action on discharge.
“All being part of one big St Luke’s team really works and we have a daily dialogue with the community and inpatient teams. Knowing the ins and outs of the organisation as a whole means you know who to refer to and who to speak to.”
During the first Covid lockdown, the nursing team started wearing surgical scrubs for practicality, naturally choosing purple in line with St Luke’s customary colour scheme, and that has carried on ever since, visually underlining their identity as experts in a very special field.
There’s a palpable sense of relief when Martin walks onto a ward. The Derriford nurses and doctors, anxious to do the best they can for their patient, turn to him eagerly.
Technology now allows much swifter sharing of information about a patient, so Martin can easily access medication records, bed management details, blood test and scan results, oncology and clinic reports. And as a nurse prescriber, he can prescribe appropriate drug treatments without referring to a doctor.
On the door of a side room door there’s the symbol of cupped hands holding a butterfly, a sign to everyone that the patient is nearing the end of life and care needs to be gentle and thoughtful. Inside, a man in his 70s is nearing death, surrounded by loved ones, but he is agitated and clearly uncomfortable.
Liaising with UHP nurses and his family members, Martin quickly organises a syringe driver that will administer palliative care medication just under the skin to relieve his symptoms and let him feel relaxed.
“It’s important that we get this right first time, particularly so the family can feel we are doing everything we can. It is not right to see someone so distressed and not do something about it,” he said. “It’s very much about the family at this stage and making sure they know you are listening, and you understand. We also always assume the patient can hear, even if they aren’t responding, so we will continue talking to them and reassuring them at all times.”
When a doctor or nurse thinks someone is approaching death and that comfort, rather than curative measures are appropriate, they will activate an End of Life icon on their electronic notes that will activate a referral to St Luke’s.
Our next stop is a busy cardiac ward, where the sister and junior doctor are seeking Martin’s opinion about a woman with heart failure who had been deteriorating rapidly over the previous 24 hours. She looks like she’s sleeping peacefully and, Martin confirms, is in the active phase of dying and does not appear to be suffering.
After seeing each patient, Martin makes notes in their paper hospital records and he’ll also add his observations, prescriptions and recommendations to the electronic system so that everyone involved in a patient’s care can be kept up to date at all times.
After a very brief lunch break, he’s hurrying to another ward to visit a frail and terminally ill woman, also suffering with dementia, who is about the be released to a specialist nursing home in North Cornwall. He’s making sure all the correct medications are in place and, because she lives off the St Luke’s at home patch, will make a referral to the Cornwall palliative care team and the woman’s GP.
Throughout the day, Martin’s reassuring presence and commitment to relieve suffering are as awe-inspiring as his philosophical and pragmatic attitude to death and dying is refreshing.
“Death is like going to sleep and we know that because people who are dying tend to have periods of slipping into unconsciousness, when they don’t remember blocks of time. Good days and bad days are part of dying. It is not something to be feared. It is disappointing, knowing the things you are going to miss, but the moment of death is not tortured; it is a release,” he said.
Nevertheless, the heavy caseload and the sadness of patients’ deaths does take its toll. Martin and Julie keep a close watch on the wellbeing of all St Luke’s team members, aiming to vary duties so the pressures don’t become individually overwhelming.
They’ve recently introduced a weekly ritual of personal reflection. Every Friday team members are invited to take a few moments out of their busy day to gather in the hospital chapel and light a candle for patients who have died. It’s a time when they acknowledge the lives lost and the efforts they have made to support those people in their final days.
Far from being a religious gesture, it’s about offering a brief, but important, opportunity for meditation in a quiet and spiritual space.
Julie said: “We sourced some little purple tealights that are heart-shaped. We light them and we write something in remembrance. We each have our own thoughts. When you are so busy you don’t usually have that moment to come away from the ward and find some tranquillity.”