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Becky and Bronwen, Occupational Therapists

This diary was written in July 2020

8:15am Arrive at work and get changed into our uniform and PPE. Make a cup of tea and start up our computers. We work as occupational therapists in the hospital palliative care team at the John Radcliffe which means we cover the whole of the hospital. We have a list of patients who have been referred to our team; we have 4 patients to see in the hospital and 3 to see out in the community.

9am We have a handover with our colleagues in the hospital palliative care team. Today we have our consultant pharmacist, palliative care consultant, speciality doctor and several specialist palliative care nurses present.

9:30am Quickly order some equipment for our patient Jane* who is waiting for a live-in carer through fast track funding. Fast track funding helps us get our patients to their preferred place of care a little quicker than through the normal routes. We think it’s safe to order on a next-day delivery as it gives the family time to sort out the living room to make space for a hospital bed. We are so grateful when families are efficient with moving furniture around, and wouldn’t be able to do our jobs without their support. We quickly pop up to Jane to let her know what’s happening and reassure her we’re doing everything we can to get her home as soon as possible. With current Covid-19 precautions we know our patients are struggling without seeing their families. Jane expresses how grateful she is to our team for our help.

10am Becky goes up to see a patient to discuss management of his breathlessness. Often symptoms like breathlessness and fatigue respond well to a mix of pharmacological and non-pharmacological management. Feeling anxious often makes people feel more breathless and it becomes a cycle, and John* who Becky sees opens up about feeling anxious about the end of his life approaching. He and Becky chat about this and how it may affect his feeling of breathlessness, and Becky goes through some techniques on how to manage this. Becky offers chaplaincy support which he gladly accepts.

At the same time, Bronwen goes to see Shelia* with Susie, one of our specialist registrars, and Mary, one of our consultants. Shelia has been in hospital for a few days after being admitted with metastatic cancer. We are worried about her pain – we haven’t been able to assess her mobility or transfers as a result of it. We want some input from our doctors to help us manage Shelia’s pain better. Shelia has a knack for metaphors and describes her pain as a Rottweiler that she would like the “teeth to fall out of”. This helps us to monitor her pain in a patient-centred way that makes sense to her. Bronwen phones her son to give him an update and chat through what equipment is likely to be needed at home. Her son is hugely grateful for the help and will start clearing space for a hospital bed to arrive next week.

12pm We both arrive back in the office, have a quick catch up from the morning and start writing up our notes and catching up on phone calls and emails. Part of our role is supporting ward therapists; sometimes this just involves giving advice over the phone or via email.

12:30 Lunchtime. We always try and aim for lunch at 12:30 as this gives us all an opportunity to check in with each other. Our job can be emotionally challenging at times so we try and encourage each other to make sure we have a half an hour break where we don’t talk about work to enable us to switch off and recharge.

1pm Run through our list again. Allocate new referrals. We pick up a new patient.

1:15pm Bronwen makes a call to Ali* in the community to find out how her Mum is getting on at home. We usually offer home visits to our patients after discharge to check up on how they’re doing and help with any issues that may have cropped up. However, due to Covid-19 precautions we’re only doing these when absolutely necessary and following up with most of our patients by phone. Speaking to Ali, it seems that her Mum is comfortable and her pain has been under control. She is managing to get in and out of bed with assistance but is spending increasingly more time in bed. We discuss that this may mean a deterioration, and encourage her to call the Sobell triage line if her Mum develops any troubling symptoms. Ali is happy to allow her Mum to remain in bed and only to help her out if her Mum is keen on it. Ali thanks Bronwen for her call and they agree Bronwen will phone again in a few days time.

Becky goes off to see the new patient, Mark*. As occupational therapists in the hospital palliative care team we have been trained to do basic symptom assessments and therefore can go and complete initial patient reviews on our own and then speak to one of the specialist nurses if we have any concerns. On review it is apparent that Mark has deteriorated since the referral was sent this morning. Mark is unable to respond to Becky; on assessment he appears to be in pain and is having difficulty breathing. Becky is concerned that these are new symptoms which indicate that he may be dying. She feels it would not be appropriate to move him from the hospital ward. She calls one of our specialist nursing colleagues to review regarding symptom management, and to confirm Becky’s suspicions that Mark is nearing the end of his life. Becky then gets consent from the ward nurse allowing Mark’s wife to visit and calls her to invite her in (visitors are currently not allowed in the hospital due to Covid-19 however special permission can be sought for patients who are approaching end of life).

3:30pm We get a call from the ward to say that a live-in carer has become available for Jane, and can start tomorrow. We hadn’t expected care to become available so quickly, and so we have a busy hour trying to sort everything out. First, we chat to Jane herself to update her and make sure she’s happy for us to continue pursuing this option. Once we’ve established this, we phone the carers to negotiate a time for the carer to start. We agree on 4pm which allows us all time to sort out what’s necessary for the discharge. We then quickly call our equipment company and change our order to a timed next-day delivery so we can ensure it arrives before midday, making sure Jane’s hospital bed is in situ when she arrives home. Our equipment company has a cut-off time of 4pm for these types of deliveries, so it feels like a bit of a mad rush! We also phone our helpful colleague in the patient ambulance service who helps us organise a risk assessment for the next morning, to ensure that we can get Jane into her house on a stretcher. We relay this information back to the ward and ask them to ensure medication and home oxygen are organised, and discuss who will make referrals to services like the Community Palliative Care Team and District Nurses.  Lastly, we update Jane’s son on all that has happened in the last hour and what time he should expect equipment, oxygen and his Mum to arrive the next day.

5pm We start writing up our notes from the last hour, making sure they are detailed so that anyone reading our notes knows exactly what’s happening. When we are discharging patient’s home for end of life care there are often a lot of things that need to be in place to ensure that transition from hospital to home is as smooth as possible. Therefore, we have developed a checklist to help us to ensure that everything is in place for discharge.

6pm Home time! It’s been a busy day but we feel that we have made a difference to our patients’ lives. We are so passionate about finding out what’s important to our patients and facilitating their wishes. Each day brings with it new joys and challenges, and so we look forward to seeing what tomorrow brings!

*Names have been changed for anonymity.