Debrief and Adapted Interview Guide Focus Group 2 Debrief with CB Notes

Attended b: 5 ED nurses, 1 ED Sister, 2 ED HCA, 1 Student and CB present as an observer. Definitions: Key words used were support not only in when patient is dying but after, pain relief, comfort, family, holistic, respect, patient wishes and comfort.

Experiences

• Only negative experiences were discussed; patients bought in from hospice as they did not know what was causing drowsiness and people coming in for symptom control who later died in the ED.

• People coming in from community when DNAR have been put in place and patients documentation has been lost

• patient did not want to be admitted to hospital in the event of acute deterioration and in some cases resuscitation had taken place when patient did not want it to.

Barriers

• ED as a place for EOL care

Many focussed on the appropriateness of the setting to provide EOL care. It is noisy, bright, no privacy. When people come in they try to resuscitate them and make them feel better before they decide that patient should be for TLC. Described as a ‘stop gap’, unable to provide certain things e.g. overnight stays, accommodate relatives.

There was also discussion as to ED main aim of ‘’saving lives’’ that time is spent trying to ‘’save’’ someone that will die due to lack of communication and documentation. Nurses present that this is in the case of doctors that work in ED are of the ‘’saving lives’’ mind set and are taught to save lives and looking at the physical aspect of patients; often nurses advocate standing back and examining patient as a whole and what will interventions achieve.

• Time

Was a huge factor throughout the focus group that people felt they did not have enough time to spend with the patient and family in this difficult time. Wanted to be able to provide reassurance but difficult when have other patients and priorities coming in. Often student and HCA’s take this

comfort role and do this when perhaps they should not be expected to. • Community

The community setting as a whole was discussed a lot in terms of validity of the DNAR, lack of support in community. An interesting comment was that you will never stop some admissions as people are not prepared for the death of a loved one and the implications this comes with. The groups also considered what roles GP and DN’s played in the admission of these patients to the ED and what they could to do help.

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Nurses within the group also felt that on the wards they had good links with PC and community and PC and community within themselves had good links but the ED was missed and left out of this.

• Care/Resources to provide care

ED gets so many patients coming in with various terminal illnesses and chronic conditions – need expertise in all of these. If someone wanted to go home who had COPD unsure of who to call

palliative care? COPD CNS? Many did not know if palliative care team came down to ED or if they did an on-call. Did not know where the faith centre was or if it was appropriate to send people there. Interventions:

• Fast track care pathway – much like NOF pathway within an hour of confirmed NOF have to do certain things. But within this hour could optimise patient care.

• Trigger system/Flagging system – PC and community matron aware that patient is in ED similar to the oncology pathway. Oncology CNS come and see the patient within certain time of them being admitted if this could happen with palliative patients. With this intervention people suggested an electronic system that it would show up if they had been on a

supportive pathway or known to hospices etc that it could flag up.

• Community support – provide support in the community educating families on symptoms and what to expect. Give contact details.

• Palliative care on-call – to be used as a point of reference if nurses are unsure of how to proceed with patients or how to get them home, what they require are home and what is available in the community. They wanted them to come and sit with the patient and provide comfort.

• Education – general education, who to contact when, knowing what resources are available, hospice at home is available which no one discussed, having hospices number on the wall so can get in touch. Resources are going to be put up in the relative’s room. Analgesic

education. Were unsure of who the link nurses were. Feedback from Handout interventions

7. Two stage screening tool – on the tool the age is specified as 65 however people suggested as it is a large ED and hospital it accepts more patients and that there should be no age limit. 8. ABCD – Liked this intervention as it immediately addresses needs of patient and involves

basic assessment which would then make them look more in depth. Many suggested a flow chart as the questions if the answer was NO or YES what then action do you take.

Suggested it could be linked to first tool in some manner to refer patients and can follow flow chart. Decisions made by junior staff are influenced by senior staff an flow chart may be able to help junior staff make more decisions regarding care. An interesting point made was that care should not be made into a checklist/tick chart.

9. SPEED – different order need to address physical and therapeutic especially medical staff more interested in physical aspects. In ED want a quick fix otherwise turns into ward care. 10. Palliative Champions – would work well need to consider more education

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11. Documentation – more resources would be useful. Care pathway and fluidity of care from community to hospital

12. Education and Training – There were things mentioned that could not be done in the ED, which in practical terms could be. Education on what is available to them, resources, community resources and services.

Development

A de brief was carried out with CB after focus group where main points were discussed and what worked well. A development will be whilst interventions were going to be explained the group was quite vocal and initial thoughts on the interventions wanted to be captured however CB and myself feel the group would still benefit from them being explained further.

An additional question will be added to further research which is what elements would you include on a similar model or within an intervention? What is important when designing an tool for use in the ED? Whilst the background is important, some of it has been covered in other studies and within this study we want to find out what interventions could improve EOL care and what would be useful within the ED.

At the start of the focus group participants are asked about experiences of EOL care in the ED, so far these have all been negative. In the next study we would like to probe further to see whether any examples of good practice can be obtained to see what works and why? This information can then be used as an example of what we want to achieve and the process can be analysed as to what was different to the bad experiences.

Reflection

I found this focus group were a lot more vocal than the previous and required me to probe less to obtain answers to the questions. There was also a lot more discussion with people suggesting ideas and then evaluating them within the focus group. I felt that I had less influence over the group and had to contribute less.

CB observed that I write notes quite a lot throughout the group and it could be beneficial for just the observer to write the key notes down as then the moderator will be more involved in the focus group and discussion can flow easier with probes being used more frequently to explore certain ideas.

Adapted Interview Guide

Questions Total Focus group time 90mins Time for each section approx. Introduce observer and moderator, names and background. Explain research

question and purpose of today to discuss palliative care and end of life in the ED. Remind everyone about confidentiality, there is not a wrong/right answer, want honest answers, opinions, views, remaining professional and confidential if any

examples of practice are used. 5mins

Starter for group to interact and set up the focus group

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meant by palliative care and End Of Life Care (EOLC)? • Is there a difference?

• Give pre set definitions of palliative care and EOL • Reactions to definition/comments/disagreements

This is to set the scene up for participants. Cote-Arsenault and Beedy (1999) suggest that first question should be neutral and simple so everyone can interact

and get to know others in the group. 10 mins

Patients entering the ED with terminal conditions or chronic illness what are people’s experiences of palliative care within the ED? Experiences of EOLC.

• Experiences good/bad – reflect on why?

• Can you identify patients in need of palliative care or at the EOL in the ED? How?

• What are the goals of care for patients at the end of life? How do they differ from other patients?

• Are there barriers in the ED which prevent palliative care happening? What are they?

The literature suggests that there are barriers within the ED that prevent adequate palliative care happening, however all these studies have been mainly conducted in the USA and so cannot directly apply them to the UK due to different healthcare

systems. Start to think about EOLC they give as HCP and how it can be improved. 20mins

Having thought about barriers to palliative care in the ED, any suggestions to how this could be improved?

• How can end of life care be improved in the ED?

20mins Hand out palliative care interventions that seek to improve end of life care in the

ED from barriers identified in literature. Discuss interventions individually in terms of feasibility, problems, impact on care, workload;

• Assessment tools – Two stage rapid Screening Tool, ABCD & SPEED • Education and Training

• Improved Documentation • Palliative Care Champions

Briefly summarise assessment tools in context of how they have been used in the ED and how they might be used.

• How could you see these being used in practice?

• Advantages or disadvantages of using them? Would they work in the ED? • Do you think they could assist PC and EOLC in the ED?

• What elements would you use or include in a similar tool?

• What is essential in a tool or intervention for ED surrounding EOLC and PC?

(5 mins to read handout)

35mins

Summary of key points and final task to ask participants to write on post it top 3 improvements in the ED for EOLC

• Could be on the hand out, could be something mentioned or something that you think could improve end of life care

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Appendix 11 – Debrief and Adapted Interview guide for Focus Group 3