Meet Mary, Lead Specialist Nurse
This diary was written in August 2020.
7am Today is my first day with the John Radcliffe hospital palliative care team! I wake up feeling apprehensive as I have been told it’s busy and ‘different to the Churchill’ (what does that mean?!), but primarily excited as I get some patient contact. Orientation and learning all of the Trust processes has limited my time with patients and families since I have been in post (two and a half months) and I miss using my skills. During a decent breakfast to see me through the morning, I check the map I have been sent to locate the team office. I then jump on my bike and cycle over to the John Radcliffe in warm sunshine, find my way in and get to the office door, where I find that my security card isn’t recognised – I knew it was going too well! I decide to get changed (in the tiny loo opposite) and then message the team to let me in.
8am I’m pleased to see this team have the right priorities as my first offer is a cup of tea. Then I am shown around the space they share with a couple of other teams.
8:30am The day starts with a review of patient workload where we discuss who has been referred and needs to be seen, and whether yesterday’s allocation is still appropriate. This leads into a conversation about who I should shadow today – Rachel and Damian are working together for most of the morning as Damian is just out of his orientation period with the team; Becky and Bronwen, our occupational therapists, are fairly quiet so are catching up on follow-up work, so we agree that I work alongside Julia for the morning, then Lauren in the afternoon.
9am Julia and I set off for the Emergency Assessment Unit (EAU) via a tour of the Emergency Department (ED). I will never remember the route. We are lucky to meet Freya, one of the band 6 nurses, who has been involved with the end of life project and shares how pleased the staff are with the new relatives’ room. This leads to a tour of the new resuscitation unit and room which has been sensitively decorated in calm colours with abstract art and the ever-required tissues.
We then pass through the rest of ED and end up in EAU, where we’re greeted by Rachel who tells us that the new referral we were due to see has just died, peacefully, with his wife and a nurse present. Julia tells me that often these referrals are from staff wanting reassurance that they are doing the right thing, and this conclusion to a referral is not uncommon, however the staff are providing great care so we move on.
10am The next two patients we are due to see are in adjacent rooms on the same ward, and both have been seen by the team previously. Julia and I have already checked the electronic patient record (EPR) to see what has happened overnight and what medication was required, so we are able to prioritise who we see first. The same nurse, Janet*, is looking after them both, plus patients in a bay with acute medical needs, and looks rushed and anxious. She tells us she is worried about both patients.
The first gentleman, Pete*, is hot, sweaty and his breathing is shallow and rapid. His Covid-19 swab was negative, but it remains a possibility that it is this causing his symptoms, and Julia and I are both wearing gloves and aprons as well as our masks when we are with all patients. He has several other co-morbidities and has been unwell for a while. The notes say that the medical team had a conversation with his family yesterday and they are aware he is dying, but are not currently present. Julia and I discuss that he needs some changes to his medication to ease his distress and we discuss these with Janet and the medical team, who adjust the doses and timeframe so that he can have some more medication now. Janet will also ring the family to let them know that he is now dying imminently and to discuss more open visiting at the discretion of the ward sister.
11am We then go to see our second patient, Alan*, who has his wife and daughter with him as he is also likely to die within the next week and the ward have offered flexible visiting. When we go in, Alan’s wife expresses pleasure that he is more awake than yesterday. The team had changed one of Alan’s medications, so this is the response that had been anticipated. However, Alan was saying he felt uncomfortable and we discuss getting the balance of medication right. Alan has declined to go to Sobell as he can’t face the upheaval, but his family are concerned that the busy ward means that his needs are not met, particularly as the side rooms are at the end of the ward. We listen to their concerns, and involve Janet in developing a care plan which reassures the family about his care. During the course of the conversation, Alan relaxes as his pain medication begins to work. With the ward sister’s approval, we encourage his wife and daughter to go and get a drink onsite before returning to reassure themselves that he is settled before they go home. They thank us for listening and for telling them the plan. Julia and I check with Janet before we leave the ward, she had felt flustered by workload and being unsure what to do for Alan, but Julia reiterated her skills and reassured her that she is doing a good job.
12:30pm Lunchtime! The team tell me that they try and eat together (at an appropriate distance!) at 12:30 every day. Today, our lunches are embellished by Bronwen’s offering of French fancies or teacakes. I head briefly to the security office to get my pass updated so I can have access to the office and wards. I re-enter the office flush with success that my pass works!
1pm The team review the plan for the day and new referrals. Lauren and I will go with Bronwen to see a man in ED who was discharged home four days ago and has come back in with chest pain. However, prior to that, Julia and I complete a management plan in relation to her Covid-19 risk assessment. The plan acknowledges the risks at work, use of PPE, and other safety precautions, and Julia reiterates she feels comfortable about her protection at work. We agree there are no changes to her working practices, but make a date for review if the Covid-19 infection rate increases.
1:45pm Off to ED to see our patient, Ibrahim*. Bronwen arranged his discharge and he was doing well when the community nurse spoke to him yesterday, but the district nurse found him complaining of chest pain this morning, so called the ambulance. He doesn’t really want to be here, however, he is thrilled to see Bronwen again. She uses his reluctance to be in hospital as an opportunity to talk about advance care planning, which he may or may not want in the future. However, we all acknowledge that chest pain is likely to require admission for investigation, unless he learns its pattern and response and can be certain it is not a new cardiac issue. Bronwen suggests that we start to record some of his wishes around hospital admission and treatments and Ibrahim agrees to discuss these with his daughter. She also reiterates her suggestion that he have a personal alarm at home, which can be worn around the wrist or neck and be used to call for help. Ibrahim admits he did have pain in the night and couldn’t call for help, but declines the alarm again. However, he agrees Bronwen can discuss his care with his daughter so maybe she will be able to persuade him.
It now appears that Ibrahim’s pain is around his lower ribs, possibly coming from his kidney area, where he has known cancer, rather than it being cardiac pain. Bronwen concludes the visit by asking Ibrahim what is the most important thing to him right now. We establish his frustration that he had to cancel a visit from a friend, and that he wants to get home as soon as possible. Bronwen agrees to see him tomorrow to facilitate discharge if the acute team agree, and will ask his daughter to contact his friend to rearrange the visit. Once back in the office, we mull over Ibrahim’s symptoms. His scan last week shows increasing disease and lots of clots in his lungs. We agree that, depending on the overnight report, we may ask the medical team to see him tomorrow. We also consider what may help his pain, but do not want to change anything at present as there is a clear plan in place from his last admission.
3pm There are no more clinical visits for me today, but as Lauren types up our visit to Ibrahim, I log into the EPR system to find the templates that I would need to do this myself.
3:30pm My final job of the day is to join a virtual meeting about the patient experience survey we plan to repeat for all patients known to Sobell. This has been implemented in previous years so everyone knows what they are doing, but we have to adjust some things because of Covid-19 and the changes in working practices.
4:45pm I head out to my bike to discover there has been a downpour and my seat and helmet are soaked, which makes for an interesting ride home!
5:15pm Home to family, food and a restful evening, and a feeling of satisfaction that I have spent time with patients and can now support the hospital team’s care in the John Radcliffe, even if there is a risk I’ll need a search party at the end of the day…
*Names have been changed for anonymity.