Palliative & End of Life Care: Supporting Patient Choice

1. 1
Janet Ortega, Head of Integrated Care, CQC
27 October, 2016
A different
ending:
addressing
inequalities in
end of life care

2. About CQC: our purpose
The Care Quality
Commission is the
independent regulator of
health and adult social care
in England.
We make sure health and social
care services provide people
with safe, effective,
compassionate, high-quality
care and we encourage care
services to improve.
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3. 1. Encourage
improvement,
innovation and
sustainability in care
2. Deliver an intelligence-
driven approach to
regulation
3. Promote a single
shared view of quality
4. Improve our efficiency
and effectiveness
3
Four priorities to achieve our
strategic ambition

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Why a review of end of life care?
• c500,000 people die in England and Wales every year
• UK ranked global #1 in The Quality of Death Index*
• But quality of care is variable:
• 90% of hospices are rated as good or outstanding
• 42% of end of life care services in hospitals are
rated inadequate or require improvement
• More Care, Less Pathway (review of the Liverpool Care
Pathway) recommended CQC undertake a review to look
at how dying people are treated across various settings.
*The Economist Intelligence Unit, 2015.

5. Why did we focus on inequalities?
• Most people die of conditions
other than cancer
• Two thirds of people are aged
over 75 when they die
• The 2008 End of Life Care
Strategy* outlined a vision of
high quality care for all…
• But inequality in end of life care
persists, and many do not
experience the good quality,
personalised care they have a
right to expect
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“…irrespective of
age, gender,
ethnicity, religious
belief, disability,
sexual orientation,
diagnosis or
socioeconomic
deprivation.”
*Department of Health, 2008.

6. What did we want to find out?
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• What factors prevent people from
experiencing good quality, joined up care at
the end of life?
• What good practice can others learn from local
level?
• What action can national and local
stakeholders take in the next five years to
address inequalities?

7. On whom did we focus?
• People with conditions other than cancer
• Older people
• People with dementia
• People from Black, Asian and minority ethnic groups
• People who are lesbian, gay, bisexual or transgender
• People with a learning disability
• People with a mental health condition
• People who are in secure and detained settings
• Gypsies and Travellers
• People who are homeless
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8. How did we carry out the review?
• Evidence review - national data on quality of care and a
literature review
• National Council for Palliative Care, Race Equality
Foundation and National Voices – to talk to people
about their experiences
• Online survey of people with EOLC experience
• Talked to commissioners, health and care staff and
people with experience, and reviewed people’s case
notes. We looked at:
• Identification and communication
• Coordination of and access to care
• Care in the last days and hours of life
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9. What did we find about people’s
experience?
• Difficulty identifying the last 12
months of life (esp. for those
with conditions other than
cancer)
• Conversations about EOLC not
always early enough
• Communication hard for
everyone, including health and
care staff
• Lack of coordination of care
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“It is hard to have the
conversations we all
need to have with
family, friends,
colleagues and in the
media, but this has to
happen...”
• Lack of understanding of people’s individual needs
• Good communication, making choices and planning are
important for getting the right care

10. What did we find about people’s
experience?
• The needs of some groups are particularly overlooked,
including:
• people with a mental health condition
• people with a learning disability
• people who are homeless
• Gypsies and Travellers
• People from these groups are often excluded from wider
health services
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“We couldn’t bring him back, we couldn’t do it how
we wanted to do it and they didn’t understand, they
didn’t think it was a big thing.”

11. What did we find about local health
and care systems?
• Quality of end of life care is
variable – hospices have highest
ratings overall
• Examples of outstanding,
responsive care in all settings –
esp. those that supported
improvement in personalised
EOLC
• Good practice associated with a
collaborative leadership
approach, with a shared focus on
addressing inequality and meeting
people’s individual needs
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12. What did we find about local health
and care systems?
• Commissioners and providers don’t always understand
EOLC needs of people from different groups
• Equality-led approach is needed to meet people’s
individual needs
• Electronic Palliative Care Coordination Systems are
not yet effective locally, but care coordinators support
improved coordination
• Some hospices engaging local communities,
delivering care based on individual need, and
supporting other local health and care services to
do the same
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13. Good practice: Frimley Park
Hospital
• Trust-wide commitment to personalised EOLC
• Service shaped by local population needs
• Systems for early identification of people with conditions other
than cancer and involvement of specialist palliative care
• Meeting people’s social, cultural, spiritual and language needs
• eg. accommodation for Gypsy and Traveller families
• Nepali interpreters from the local community
• Strategy to meet EOLC needs of people with dementia
13

14. Good practice: The Baslow Health
Centre
Practice rated outstanding after helping 97% of palliative care patients
die at home
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15. Good practice: Inclusion Healthcare
Social Enterprise
• Primary medical services for homeless people in Leicester
• Focused on improving health and wellbeing of people who
may be vulnerable because of their circumstances
• EOLC lead working with local hospice
• An Emergency Health Care Plan developed with each patient
recording their wishes and treatment preferences
• Support for patients to live well until the end of life
• Support for funeral costs and memorials
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See video at http://www.cqc.org.uk/content/case-study-outstanding-safe-care-all

16. Good practice: Central Manchester
CCG
• Equality as the starting point for EOLC approach
• Specific consideration of the needs of people from socially
excluded groups
• Close engagement with local community and voluntary sector
• Feedback from people about their needs informs
commissioning e.g. care home support project to train care
home staff
• Hospital in-reach for homeless people
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17. Encouraging improvement in end
of life care
We will play our part in achieving the vision of individual, personalised
end of life care outlined in the Ambitions for palliative and end of life
care:
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18. CQC encourages…(1)
Local health and care system leaders
• Working together, developing plans for the community
Commissioners and providers
• Reducing inequalities, eliminating discrimination and
advancing equality when developing, arranging or
delivering end of life care
• Making sure staff have knowledge, skills and support
they need
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19. CQC encourages… (2)
19
Hospices
• Championing an equality-led approach and
engaging local communities
• Supporting others to do the same
GPs
• Early and ongoing conversations with people
• A named care coordinator

20. CQC will…
• Reflect the importance of inequalities
in our future regulatory approach
• Strengthen our assessments to make
sure end of life care services are
meeting the needs of different groups
• Assess quality of end of life care for
everyone in services we do not
currently rate for end of life care
• Consider how services for people who
may be vulnerable meet end of life
care needs
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21. And our final promise
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We will use our
independent voice to share
our findings and insight
about quality of end of life
care to encourage
improvement at local and
national level

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Thank you
www.cqc.org.uk
enquiries@cqc.org.uk
@CareQualityComm
Janet Ortega
Head of Integrated Care
janet.ortega@cqc.org.uk