Agenda item

This report updates the Committee on progress made in relation to their review on End of Life Care. It also asks them to discuss further some of the issues raised to date and to identify the next steps for the review.

Members considered a report which updated them on progress that had been made in relation to their review on End of Life Care. It also asked them to discuss further some of the issues raised to date and to identify the next steps in the review.

The Clinical Director of Unscheduled Care and the Director of Partnerships and Innovation from Harrogate and District Foundation Trust (who had the contract to run the York and Selby Out of Hours Service) presented papers to the Committee, which were attached at Annexes H-H4 to the report.

In addition to the information contained within their report they highlighted the following key points:

·        There were concerns about some of the anecdotal evidence that had previously been received as part of this review and the Out of Hours Service were concerned that these comments were taken in context of how their service operated. The Out of Hours Service saw approximately 130, 000 patients a year and provided a range of different services. Much of the time everything ran very smoothly, however when dealing with this many patients then occasionally the service would not get everything right

·        Decisions to put a DNACPR order in place lies with the ‘in hours’ service i.e. with the patient’s GP or with the hospital.

·        The Out of Hours Service does not have a role in putting DNACPR orders in place as they have little prior knowledge of the patient – it would therefore be deemed inappropriate.

·        This was a multi-step process and unfortunately there were some problems with the various different IT systems and how they communicated with each other.

·        Varying degrees of access to patients records between hospital, GPs and  Out of Hours Service.

·        The call handling service for the Out of Hours Service is operated by Yorkshire Ambulance Service; when a patient or their carer/relative phones in distress this can trigger an ambulance response.

·        DNACPR does not mean ‘do not treat’ – we have to be clear what we are discussing here – admitting a patient to hospital, even if there is a DNACPR in place, is not always the wrong thing to do.

·        Since the provider arm of the Primary Care Trust (PCT) was split the Out of Hours (OOH) service was operated by Harrogate and District Foundation Trust and the District Nurses by York Teaching Hospital NHS Foundation Trust – the two organisations had slightly different agendas and the two were slightly less joined up than when one organisation had responsibility for both.

·        Challenges for the OOH with decreasing budget over the past five years but an increase in activity.

·        Concerns about what impact the NHS 111 Service will have on OOH – this could increase OOH workload but with no extra resources available.

·        If looking for ways of improving – there was a need for a better flow of interagency communication.

Members asked questions around access to medical records, ongoing projects within IT and where the NHS was at with improving continuity and information sharing. In response a representative from Harrogate and District Foundation Trust said that some parts were now standardised but interfaces between different IT systems presented difficulties. There was a national ongoing project around this but there did not appear to be any timescales for completion. In North Yorkshire there was no ongoing active work around this so it would continue to be a challenge. However, the NHS were committed to working in partnership and trying to improve systems.

Questions were asked around how the new NHS 111 Service would work alongside the OOH Service. In response it was highlighted that there were potential issues around when the NHS 111 Service’s software said that a patient needed to see a GP.

There were concerns that the percentage of telephone triage would reduce and the OOH Service would need to see many more patients face to face – this would have a knock on effect on the OOH Service’s capacity to respond; especially as there were no plans to provide any extra clinicians. There were currently very few doctors to cover a very large geographical area across York and North Yorkshire. For example there was only one OOH Doctor for the York and Selby area.

Discussion was had around the low number of DNACPR forms in place for people with an expected death. It was felt that more robust policies needed to be put in place with the OOH being made more aware of when a DNACPR order had been put in place. The Medical Director at York Hospital highlighted the importance of sharing information as much as possible and said that most GPs could access hospital records for a patient and vice-versa; however this did not currently stretch to the OOH Service. There was also a need to be mindful of only sharing information about a patient with those who needed it and there were regulations that all were bound by in relation to this.

It was difficult to store DNACPR forms electronically as they were essentially ‘live’ documents that should be reviewed at frequent intervals. The form should also travel with the patient and not be kept by the GP or the hospital.

However, despite some of these challenges it was felt that information sharing was fairly good but improvements needed to be made to further share information on DNACPR with the OOH Service and make them aware when these were in place.

Discussions widened to ‘how can we do something together with the public around the delicate subject of End of Life Care?’ It was noted that it was a sensitive issue and that the review only touched on one area of this subject.

A representative from York Carer’s Forum felt that community meetings could provide a chance for discussion and input into the successful use of the DNACPR form and believed that people would welcome the opportunity to have an input into this debate. Further discussion led to it being said that there was a need for increased awareness around having End of Life Care discussions and there was room for a broader public debate on this.

A representative from the Independent Care Group felt that whilst we had come a long way in this area, stronger connections needed to be made between GPs, OOH Service, Yorkshire Ambulance Service and Care Homes. All partners had a responsibility to ensure that a patient’s wishes were being carried out. She also spoke about how some patients with neurological problems in care homes had an “advanced decision” document and asked how this would sit alongside a DNACPR order.

Members were informed that an advanced decision document was a legally binding contract, which allowed the patient to refuse treatment. In comparison to a DNACPR, it could also be interpreted differently, for example if an unforeseen circumstance occurred, medical practitioners might resuscitate a patient, against the decision, but this could not happen if an ‘advanced decision’ document were in place.

Discussion took place on the proposed reform of the DNACPR form in 2013, and further publicity about the form and options for End of Life Care. It was reported that there was an option on the form that would allow for the form to be completed at a patient’s request. The Chair suggested that family members and the voluntary sector be involved in the group that would review the form.

Officers at City of York Council spoke about promotion of the form and information sharing and stated that this would be useful within the development of Neighbourhood Care Teams.

Further people spoke about how the focus on End of Life Care needed to be broader, and that more information should be shared at an earlier stage. This would then avoid the sense that it was a subject that was too difficult to talk about. In addition it was also suggested that the DNACPR form was only one part of the End of Life Care Review, and that it was important that people knew what other options were available to them, such as Living Wills.

Discussions moved to some possible areas where recommendations could be made namely:

·        Better press and publicity around End of Life Care issues in general leading to increased public awareness and willingness to have conversations around this subject.

·        Improvements to information sharing between the different agencies involved.

·        Improvements to IT systems.

·        Partnership working between Clinical Commissioning Group and City of York Council (using Neighbourhood Care Teams).

·        Reviews of DNACPR forms already in place are done in a systematic way.

·        Further work on ‘advanced decisions’ and DNACPR orders and how these can be used side by side.

RESOLVED:       (i)      That the report be noted.

(ii)      That a draft final report on this review be prepared for a future meeting of the Health Overview and Scrutiny Committee.¹

REASON:                     In order to progress the review towards completion.