Issue - items at meetings - Sussex Integrated End of Life and Dementia Care Sussex Pathway (June)

Report of Chief Operating Officer (copy attached).

(1)       That the  revised pathway be approved for implementation to enable health and social care providers to ensure that the needs of people with dementia are integrated into end of life care planning, service specifications and contractual agreements.

9.1       The Committee considered a report of the Chief Operating Officer, Clinical Commissioning Group, which requested approval of the Pan Sussex Integrated End of Life and Dementia Care Pathway.  The pathway had been developed through multi-agency and multi-disciplinary stakeholder group collaboration across Sussex as part of the End of Life Care in Dementia Regional Innovation Funded project for NHS Sussex.  It was part of the Joint Dementia Plan for Brighton and Hove. The Brighton and Hove CCG Strategy Group supported implementation of the pathway as agreed at the meeting on 8 January 2013.  The report was presented by the Dr Christa Beesley, Accountable Officer, CCG and Simone Lane, Commissioning Manager, CCG. 

9.2       Members were informed of revisions made to the report since it had been considered and deferred at the last meeting.  The report now mentioned that there had been discussions with lay members and consultation with the Older People’s Council.  Terms of reference had been included.  Reference to the implementation of the Liverpool Pathway had been removed as this was considered to be a clinical decision.  More context had been provided to advanced care planning.

9.3       Councillor Marsh stated that she had been relieved that all reference to the Liverpool Pathway had been removed from the report.  However, she was concerned to hear the implementation of the Liverpool Pathway referred to as a clinical decision.  Councillor Marsh welcomed the emphasis in the report that the pathway was about helping and supporting people as their condition deteriorated.

9.4       Dr Beesley explained that the Liverpool Care Pathway could be used with families and patients in the last few days of a person’s life.  The end of life for a person with dementia was similar to a cancer patient.  There was a need to manage people and diagnose dying.  Work with the Gold Standard Framework had shown that people with dementia were not receiving the same standard of care as with other illnesses.  People with dementia were less able to stay at home and have a “good death”.  The Sussex Integrated End of Life and Dementia Care Pathway aimed to help families & patients to achieve this. 

9.5       The Liverpool Care Pathway could help in assessing whether the person was comfortable and receiving the care they needed.  It would lead to increasing the levels of nursing and care.

9.6       Councillor Marsh stated that she had concerns around the withdrawal of nutrition and hydration. 

9.7       Geraldine Hoban explained that the wording on the last report gave the impression that the pathway was actively promoted.  Officers wanted to change that to say that it was a clinical discussion with the family.  Ms Hoban mentioned that the report had been taken to the Health Overview and Scrutiny Committee where it had been well received. 

9.8       Councillor Mears referred to section 3.5 of the report.  She was pleased to read that the wording “implement Liverpool Care Pathway” had been removed in response to members’ concerns. However, Councillor Mears was not happy with the comment that “…this level of detail was inappropriate…”  Councillor Mears said that she was aware that the government had stopped £30m worth of funding for the Liverpool Care Pathway due to concerns about some aspects of the pathway.  Councillor Mears stated that she did not support the Liverpool Care Pathway for a number of reasons.   

9.9       Geraldine Hoban remarked that she understood Councillor Mear’s concerns about the Liverpool Care Pathway but asked if Councillor Mears could endorse the report.   Councillor Mears replied that the report did not reassure her that families would not only be consulted but would understand what it meant in terms of the withdrawal of nutrition and hydration.   She asked if this was explained to families.

9.10    Dr Beesley explained that the end of life pathway was about being open about dying.  Endorsing the report would lead to a more open approach to dying of dementia.  It would be managed in a similar way as the end of life care for cancer patients.  It was about having a conversation with people when they had the capacity to make decisions.  It needed to be an open discussion. 

9.11    Councillor Barnett stated that she was uncomfortable with the report.  She had seen people die when the Liverpool Care Pathway had been implemented.  Councillor Barnett commented that a drip could have been used to make people more comfortable.  Meanwhile, Councillor Barnett was concerned that people who had dementia were not capable of having discussions.   

9.12    Councillor Summers asked if the purpose of advanced care planning was about controlling symptoms.  Dr Beesley replied that anyone talking with dying patients needed special training.  Every decision was an individual decision.  With regard to eating and drinking, some people did not want to eat or drink when they were dying.  There needed to discussions with the individual.  

9.13    Councillor Meadows had mixed feelings about the report.   Although the reference to the Liverpool Care Pathway had been removed, she was worried that it was being called something else.  Councillor Meadows was pleased that death was being spoken about openly.  She stressed the importance of including the family at the start of the process.

9.14    Geraldine Hoban stressed the importance of training and development.  The principle was the full involvement of patients and their carers.

9.15    Councillor Bowden informed the Committee that for many years he had worked for the National Council for Palliative Care.  He considered that clinicians often felt families should not know the truth and he was concerned at the way doctors were trained in this respect.  Regular careful training was required in implementing the pathway.  The National Council for Palliative Care had some good literature on this subject.  Councillor Bowden mentioned that he had worked with Dame Cicely Saunders, the founder of palliative care.  She had spoken about openness and fairness which was a good guide.

9.16    Councillor Norman remarked that he had listened carefully to all the comments and noted that a great deal had been said about how things had been dealt with in the past.  The report explained how to take the process forward.  Councillor Norman stressed that he did not see the report as a final document and expected that there would be advances in the future.  The appendices went into a great deal of detail on how to improve end of life.  Councillor Norman supported the report and thought it was the way forward. 

9.17    The Executive Director of Adult Social Care stressed that the pathway was about having an open conversation with families and patients.  Open conversations would improve matters.

9.18    Geraldine Hoban informed members that officers had tried to revise the document to make take on councillor’s comments at the last meeting.   She asked if there was any way members would like the document to be re-framed.

9.19    Councillor Marsh remarked that it was a good report but she wanted clear direction regarding hydration.  

9.20    Councillor Mears stated that although there was excellent work in the report, she was not reassured that discussions could happen with families and that the work would be carried out across the board.  

9.21    Councillor Wakefield referred to Appendix 1a, Phase 5 (nearing the end of life including care in the last days of life).  This section referred to supporting relatives understanding and acceptance of the dying phase and recognising and supporting the person’s spiritual and cultural needs.     

9.22    Dr Beesley agreed this section explained good practice.  The report was promising what members wanted.  The proposals were being written down in a way that would make them clear.  

9.23    Councillor Norman remarked that the document was a good report which would improve the services provided.  He hoped the report would be approved. 

9.24    Councillor Meadows stated that although she still had some concerns she felt that the report was a step forward.  She was concerned that if the report was not agreed, it would not improve matters for families in the future.  She would therefore agree the report. 

9.25    The Chair informed members that the points made during the discussion could be taken back to GPs and GP organisations. 

9.26    RESOLVED - (1)      That the revised pathway be approved for implementation to enable health and social care providers to ensure that the needs of people with dementia are integrated into end of life care planning, service specifications and contractual agreements.

NOTE: At this point in the meeting the Clinical Commissioning Group members left the meeting as Part A – Jointly Commissioned (Section 75) Business had concluded.