As part of Nottinghamshire’s involvement in Dying Matters week, the following blog has been written by Laura Helme, a Nottingham City Community Palliative Care Nurse, detailing her working day and allowing for a greater understanding of this area of work.
I arrive at the office just before 8.30am. The first job of the day is to review my caseload, especially focusing on anyone I am particularly concerned about. I notice that my patient Margaret* (patient names have been changed for confidentiality) has died overnight. Whilst I had been aware that Margaret was gradually becoming more unwell, I am still caught off guard. I take a few moments to reflect on this with one of my colleagues and make a note in my diary to call her husband George* later.
I have a meeting with my team at 9am, to review patients waiting to be seen by the service. We ‘check in’ with everyone and discuss any patients we may have concerns about. Due to the covid pandemic, we do this virtually at the moment, as whenever possible we work from home instead of in the office.
I then prepare for my first visit of the day to Mohammed*, who has been newly referred to our team for pain management. Mohammed lives with his wife Zainab* and has metastatic prostate cancer. I read Mohammed’s notes and recent clinic letters, then call ahead to confirm my appointment and to check Mohammed and Zainab do not currently have any covid symptoms.
Wearing PPE, I greet Mohammed at the door and he shows me through to their lounge and introduces me to Zainab. I explain my role, and start the conversation by asking Mohammed what is most important to him to address today. Mohammed explains that he is struggling with back pain, which is affecting his sleep, and he feels his mobility has declined. Mohammed also talks about Zainab, his worries about how she is coping and not wanting to be a burden on her.
We agree to discuss Mohammed’s pain first; I complete a pain assessment including the medication he is already on and discuss what he finds helpful in managing his pain. We agree he would benefit from increasing his long-acting painkiller. As a non-medical prescriber I am able to do this for him. Mohammed will also keep a log of how much of the short-acting painkiller he needs each day so I can review this next week with him.
Mohammed feels his back pain and reduced mobility is affecting his independence. He would like to build up his strength and be able to do the washing up again, as he feels everything is left to Zainab at the moment. We discuss how a referral to the occupational therapist and physiotherapist in our team for assessment would help him to work towards these goals.
Mohammed and Zainab talk about how they are starting to think about the future, and what support they may need. We discuss what is important to Mohammed, and explore how he would like to be cared for in the future. I introduce the ReSPECT form – a resource that focuses on what is important to the patient and can be used to develop an agreed plan for future care and emergency treatment; and explain that this is something we can work on together on future visits.
We agree that I will return next week to review his pain and continue our discussions about the future planning.
On my return to the office, I take part in an on line local GP’s GSF (gold standard framework) meeting. This is an opportunity for healthcare professionals to discuss patients who they think may be in their last year of life. It allows us to discuss patient needs and to ensure patients’ symptoms are managed and they have the support they need. This information is shared on ‘EPaCCS’, our electronic palliative care coordination system. One of the GP I work with mentions someone who is not yet under the care of our team but I think they would benefit from our support, so she agrees to make a referral. We also reflect on the care given to a patient who died recently; talking about what worked well and what we can all learn to help us continue to provide the best possible care for our patients.
In the afternoon I visit another patient, Rachel*, who I have known for several months now. She has pulmonary fibrosis, and over the last few days she has felt less well and more breathless. She saw her GP two days ago and they discussed that this deterioration was likely due to the progression of the disease and had ruled out a chest infection. Rachel had indicated that if she became increasingly unwell, she wished to remain at home and not go into hospital, so we agreed to focus on ensuring her comfort. Yesterday we started a syringe driver containing medication to help her breathing feel more comfortable. Community nurse Claire* arrives at the house to replenish the medication in the syringe driver.
Rachel explains she feels much more comfortable today since the syringe driver has been in place. Her husband Pawel* reports she has been sleeping more today and not managed anything to eat. We have an open conversation about how things have changed over the past few days; Rachel describes recognising the changes this time and is aware she may be reaching the end of her life. I ask if there is anything in particular that worries her at this time. She tells me her biggest fear is the feeling of gasping for breath, especially at night. We discuss a referral to ‘hospice at home’, so that she could have a hospice nurse with her overnight who would be able to provide support, reassurance and extra medication if needed.
It’s really important to me that Pawel also feels supported during this time, we talk openly about how he is coping and I encourage him to call the district nurses if Rachel is struggling with her symptoms. We also explain that when Rachel dies, he should call the district nurses rather than 999. Claire and I ensure that all the relevant paperwork is in place, including prescription forms for the medication and a signed ReSPECT form, that has been discussed and agreed with Rachel and Pawel, that clearly states ‘do not attempt cardiopulmonary resuscitation’. We also ensure this information is shared on EPaCCS, so that any healthcare professional that may be caring for Rachel is aware of her needs and specific wishes.
Finally, I return to the office, and I call George, Margaret’s husband. I find out that Margaret had died peacefully yesterday evening. We talk about how George is coping, and remember Margaret together and we agree that I will call George again in a few days for on-going support.
I write up notes from the visits and calls I’ve made today and make onward referrals.
Before heading home I check in with my colleagues to offer support and a chance to reflect on the day.
*all names changed for confidentiality.
Date published: 10 May 2021