DOH 100152-0001

LIVERPOOL CARE PATHWAY ROUNDTABLE MEETING

Those attending

¯ Norman Lamb MP, Minister of State for Care and Support (Chair)

¯ Tony Bonser- patient and families

¯ Fiona Bruce MP
¯ Patrick Cadigan - Royal College of Physicians
¯ Denise Charlesworth-Smith - patient and families representative
¯ Amanda Cheesley - Royal College of Nursing
¯ Dr Anthony Cole - Medical Ethics Alliance
¯ Jane Collins - CE Marie Curie Cancer Care
¯ Professor John Ellershaw- Marie Curie Institute, University of Liverpool)
¯ Claire Henry- Director, National End of Life Care Programme
¯ Ruthe Isden-Age UK
¯ Baroness Knight of Collingtree
¯ Professor Patrick Pullicino
¯ Stephen Richards- Macmillan
¯ Eve Richardson - CE, National Council for Palliative Care
¯ Heather Richardson- Help the Hospices
¯ Dr Peter Saunders - Care Not Killing Alliance
¯ Professor Keri Thomas - Royal College of General Practitioners
¯ Martin Vernon - British Geriatrics Society
¯ Dr Bee Wee - Chair, Association for Palliative Medicine

¯ Tessa Ing, Head of End of Life Care, Department of Health

¯ Diana Kirby, Department of Health
¯ Mina Vadgama, Department of Health

Introduction and purpose of meeting

1. The Minister welcomed everyone to the meeting. He explained that the

conversation would be recorded to ensure an accurate record but that this was
not to be made public.

The Minister set out the background and purpose of the meeting. He said that all
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those present shared a common purpose to improve the quality of care at end of
life, though there was some disagreement about how best to do so. Media
coverage was showing that there were public anxieties which needed to be
addressed. In particular, he was concerned that schemes such as local CQUINs
might be having unintended consequences. He also intended, in other fora, to
pursue the issue of QOF Indicators for palliative and end of life care. The media
coverage highlighted that communication was clearly a key issue but it was also
important to find out what lay behind the concerns which had been voiced.

3. He invited attendees to present their perspective on the Liverpool Care pathway.

Professor John Ellershaw said that the LCP had been devised to provide the
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best possible care for dying people. It was in line with GMC guidance on care of
the dying. The LCP was subject to regular national audit. Training, and excellent
communication with patients and families, were critical if it was to be used to best
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effect. He was concerned that the portrayal of the LCP in the press risked driving
quality back to the poor standard of care which had been the norm before its
introduction, and which had been the reason for its invention.

Denise Charlesworth-Smith described the care received by her father. The

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family had received no explanation of what was being done or what they could
expect. She was now in touch with 1,327 people via Facebook, who were
sharing similar experiences. She felt that LCP’s reputation was now damaged
past repair and that there needed to be a new focus on patients and
communication.

Tony Bonser said that even though his son’s care had been good he was still
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experiencing guilt and anger following the death which might have been mitigated
with better communication. His experience had led his becoming the patient
champion for the National Council for Palliative Care. He said that this was not
just a professional issue: society as a while needed to be more open to
discussions about death. He felt that LCP needed to be overhauled with a
emphasis on patient and carer-centredness and accountability.

Eve Richardson said that end of life care needed to be provided to a common
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standard across the country. Dying Matters had been set up to tackle the social
taboo and had found that they needed to work as much with GPs as with the
general public. They were beginning to see behaviour change as a result. The
focus groups which Dying Matters had run in response to the LCP coverage had
resulted in a 60/40 split between poor and good experiences. She was anxious
that professionals received the right messages about end of life care, informed by
actual patient experience, and invited Ms Charlesworth-Smith to help with this.

Dr Anthony Cole set out his major concerns about the use of the LCP. Junior
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doctors felt under pressure to use it for fear of compromising their future careers.
Senior doctors felt that they were losing control of their own patients. He was
concerned about the legal aspects of consent for the LCP. Palliative care nurses
felt that they were being faced with a moral dilemma. He had come across
excellent end of life care but not involving the LCP.

Professor Patrick Pullicino said that the LCP was fatally flawed by the absence
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of evidence to back up a scientific identification of dying. The LCP was therefore
killing people and should be withdrawn. He felt that there should be a judicially-
led review of LCP.

10. Claire Henry said that the National End of life Care Programme had a reputation
as an honest broker. It existed to improve end of life care, including the evidence
base for practice. It was therefore well placed to integrate the four projects which
different professional groups had initiated to examine experience of LCP. These
focused on patient experience; complaints; a survey of health professionals; and
a literature review of the evidence about LCP. These projects were to be
complete in the New Year.

11. Dr Bee Wee said that the key issue was the quality of palliative and end of life
care. She was concerned that the media coverage was frightening people away
from good practice. The survey of professionals would go as widely as possible
to explore experience of integrated care pathways for the end of life, looking for
concerns including evidence of non-clinical pressures, with a view to finding
solutions to them.
 DOH 100152-0003

Discussion

12. The Minister opened the subject up for debate. Points made included.

Pubfic perception

Media coverage had suggested that the LCP was euthanasia, which is illegal.
People were not told what the LCP actually was. In addition, the public was
being led to believe that loved ones who had died on the LCP could all have
survived had they been given fluids.

14. The response from the medical profession had not reassured the public or MPs.
It was important that any review was seen to be robust and to be responding to
these concerns.

¯ Training

15. 60% of medical staff reported that they had had no education or training on end
of life care in the previous 5 years. Communications training was needed much
more widely than just for EoLC. Issues such as DNACPR and Advance Care
Planning meant that a more subtle vision of the medical profession was needed:
not just "heroic doctors".

16. In care homes, training in Advance Care Planning (for the Gold Standards
Framework) had proved very helpful in facilitating discussion and dispelling fears.

17. Training needed to be available for nurses and health care assistants, especially
as the service was currently losing nurses. Hospice staff were an excellent
source of expertise to support their NHS colleagues.

18. Specifically, professionals needed to be trained in the diagnosis of death, and to

be ready to change their approach quickly if someone’s condition did not follow
their prognosis.

¯ Poficy

19. EoLC was included in the Mandate for the NHS and in the Outcomes Framework
which meant that it would continue to be a priority beyond the current transition.

¯ Community-based care

20. Current concerns largely centred on hospital-based care but as more care was
provided in the community, in line with people’s wishes, it was important also to
concentrate on improving the patchy performance of care homes in this area.

21. Care for older people as a while needed attention: EoLC was the tip of the
iceberg for issues of communication, dignity and quality of care. LCP needed to
be placed into the right context to work, and to be applied systematically.

¯ Registers

22. Although the media had swept these issues together, end of life care registers
were a completely different matter from LCP. They covered the last year of life,
rather than the final hours or days. There was evidence to show that they
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improved the quality of care. Electronic Palliative Care Coordination Systems

also addressed the issue of consent.

23. All those present confirmed that they and their organisations would be happy to
help with the work to improve this aspect of care at the end of life.

Summary and next steps

24. The Minister summarised the discussion and set out the next steps.

25. The extent of the media coverage showed that there was an issue to address
with regard to use of the LCP. It was important not to undermine all those
professionals and organisations who were doing their best to provide good care
at the end of life but an investigation was needed to restore public confidence.

26. Key issues were communications, training, bereavement care, quality of

diagnosis and dignity.

27. The work in hand would therefore be taken forward as a review. It would need to
be, and to be seen to be, rational and objective. It would also need to be seen as
independent in order to command respect when it reported. The Minister would
therefore identify an independent Chair to oversee the review and to report to him
and to the NHS Commissioning Board in the New Year.