Transcript Dying Matters

Dying Matters
Eve Richardson,
Chief Executive
The National
Council for
Palliative Care
North West Event
“Many consider death to be the last great
taboo in our society and ….most of us find it
hard to engage in advance with the way in
which we would like to be cared for at the
end of life.”
End of Life Care Strategy, Department of Health, 2008
Dying Matters - the Challenge
We don’t talk about
dying and death impacting on our
end of life choices
Only 29% of people
talked about their
wishes in 2009 - less
than in 2006 (34%)
500,000 people die each year in
England – 60 % in hospitals, yet 70%
of people would like to die at home
The Dying Matters Coalition
Set up by the National
Council for Palliative
Care, the umbrella Charity
for those involved in
palliative care, to support
the 2008 End of Life Care
Strategy
It is a broad based,
inclusive national Coalition,
working in partnership, with
over 10,000 members
across a range of sectors
Our Mission:
“Support changing knowledge, attitudes and
behaviours towards death, dying and
bereavement, and through this to make ‘living
and dying well’ the norm.”
Why talk about dying, death and
bereavement?
Reduced feelings of
isolation
Reduced fear of dying
Minimising guilt and
regret among the
bereaved
Wider participation in end
of life care
People empowered to
campaign for
improvements
More people get needs and choices
met
Improved care becomes a greater
priority for the public and for
professionals
Definitions –
Cause of Death
supportive care
Total Deaths = 502,599 England and Wales 2006 (ONS)
3%
34%
0%
20%
28%
40%
2%
14%
60%
19%
80%
Circulatory Disease
Cancer
Respiratory Disease
Neurological Conditions
Renal Failure
Other
100%
People’s needs don’t change just because
there’s a new Government
True in April, true in June:
• More older people
• More dementia & multiple
conditions
• More people will die each year
• Numbers of home deaths currently
falling
3 million people will die in the United
Kingdom
during the next Parliament...
millions more will be bereaved...
most people won’t die where they want to...
End of Life Care – a few facts
The Current Situation:
The Challenge:
• Only 29% of people talked about • Dementia will rise from 700,000
their EoLC wishes in 2009
people currently to 1 million in
2025
• 54% of complaints in acute
hospitals related to care of the
• Death rates will rise from 503,000
dying in 2007
in 2006 to 586,000 in 2030
• There are significant
geographical variations in
services
• 25% of all deaths are caused by
Cancer yet 95% of those who
access specialist palliative care
services have cancer
• People are living longer, death
rates have declined but raise
again soon
• Lack of capacity for further deaths
in hospitals or hospices will
increase demand in care homes &
other supported housing & home
deaths
• New supported services needed
to ensure good end of life care
• How can we campaign for
something we don’t talk
about?
Words used to avoid saying dying
or dead
Issues to address
Public attitudes and beliefs
varied, need to understand
& respect diversity of views
across communities,
generations & cultures
• Different approaches
depending on gender,
age,
community etc.
• expectations of our ‘high
Tec society’
Need to understand professional fears and
barriers:
– Fear of getting it wrong, seeing death as
failure (their job is to “make us better”)
– Of own mortality
Core training and support for all staff groups
Success Indicators
Behaviours
•
•
•
•
•
•
Wishes of dying people
discussed and recorded
Wishes to donate organs
discussed and recorded and
more people donating organspromoting positive ‘life-giving’
Funeral wishes discussed and
recorded
More wills written
More open professional and public
discussion about death and dying
and more wishes met
More open discussion by public
and professionals about grief and
loss
Knowledge:
•
•
•
•
More carers aware of the wishes
of the cared for
More knowledge about possible
options that could improve quality
of life
More knowledge of financial
implications of death and need for
advanced planning
Better understanding about
sources of advice and support
Attitudes:
•
•
•
•
Less fear of death
and the process of dying
Less avoidance of dying
people and relatives
Less regrets- no rehearsal
Our Data and Insight sources
Nat Cen
Quant
Survey
GP baseline
from
ComRes
Kings Fund
ICM
Omnibus
Quant
Survey
Insight
Regional
surveys and
qualitative
data
NFPSynergy
Qualitative
research
Nottingham
Literature
review
Literature Review key findings
People welcome
clinicians who initiate
discussion on an
advance care plan
Shifting preferences
for hospice, home and
hospital care related to
culture and history
Confusion/ contradiction about definitions
of death and organ donation.
Wide agreement about characteristics of
quality care at end of life
Dying Matters NatCen Survey results
Have you discussed your wishes
80
70
60
50
Male
40
Female
30
20
10
0
Medic al
Spiritual Needs
Priv ac y and peac e
Dy i ng wi th Di gni ty
Where I prefer to
die
Pain relief
None of Thes e
Why don’t we talk about dying
47% of men
Death is a
long way
off
43% of women
20%
of 75+
3% of 75+
19% of men
I am too
young to
think
about it
16% of women
NatCen Survey Results
% of people surveyed in the North West
50%
45%
40%
35%
30%
25%
20%
15%
10%
5%
0%
I don t feel
Death feels a long
comfortable talking
way off
about it
I am too young to
There is no one Other people do not
discuss death
available for me to want to talk to me
talk to about death about my death
Keep putting it
off/haven't got
round to it
Have you actually discussed your wishes?
25
Medical
Spiritual Needs
Privacy and peace
Dying with Dignity
20
Where I prefer to die
Dip ?
15
10
5
0
16 to 24
25 to 34
35 to 44
45 to 54
55 to 64
65 to 74
75 or more
Research Conclusions
• Consensus among the public,
across cultures, on factors
contributing to good EoLC
• Assumptions about individualism
and autonomy and personal
control don’t always fit well with
needs and daily experiences at
the end of life- where people
want and need help and support
• Only 29% have talked about
these issues either to family or
professionals
• Further work on attitudes must be
rooted in understanding of the
• Most research has used surveys- experiences of end of life
quantitative measures to assess
• Cultural, history, role of faiths,
attitudes- providing little
and peoples meaning and belief
opportunity to reflect
systems are critical
• Important since taking part in a
study is often rare opportunity
to think about EoLC issues
Implications for Action
Communication is the key
Need to make it easier for
more people to talk about it.
May need:
– different strategies for
men and women
– regional strategies
Need to use different
approaches for different
groups, segment
audience and approach
/ materials
The “It’s a long way off” perception is
key
People more likely to talk to trusted
family members and GPs
Dying Matters Coalition Progress
Identified key
target groups:
• 55 – 65 years
• 65 – 75 years
• GPs
Developed range of
leaflets, poster audio
material & a website:
www.dyingmatters.org
Developed Key
Performance Indicators
to measure progress
Dying Matters Awareness Week
Over 75 events
happened across
England: conferences,
workshops, art displays
65 slots of broadcast coverage:
- four articles in the national
papers
- 13 in newswires &trade titles
- 30 regional pieces across
England 1.5 million+ listeners
heard the Dying Matters message
on radio
Over 30,000 Dying
Matters leaflets sent
to members
Delivering a patient and
people driven social marketing
strategy to achieve the Dying
Matters Coalition’s aims
Our Strategy
Specific target audiences
Research and insight driven
Specific KPIs set out
QIPP driven
(Quality Innovation, Prevention, Productivity)
Coproduction and delivery and VFM
Practical help, not nagging or preaching
Planned and phased approach
Implications for action
Make it easier for
more people to talk
about it The ‘Its a
long way off’,
perception is key
Need to use different
approaches for
different groups,
segment audience and
approach / materials
“We have classes if you’re going
to have a baby, getting married,
divorced, but there’s nothing for
dying…”
Audience segmentation and
targeted action for each segment
Age
55-60
60-65
65-70
70-75
Gender
Strong social Weak social
networks
networks
Better Off
Less well off
Good Social Networks
Well off
Less well off
Poor Social Networks
Profile: Female 60 – 65 Strong social networks - Less well
off
Partner
Faith and
Living at home, working parttime. Husband employed in
public services. Engaged with
community through work and
volunteering
Media influences
Occasional
newspaper reader,
avoids most news
Social Networks
/ groups and
clubs
Via work and other
interests
Church and other
volunteering activities
Key Messages
Everybody deserves a ‘good death’ and this is
more likely to be achieved by talking about it early
on. A good life needs a good ending; it’s vital that
people talk about their needs and plan their death
with those around them.
Propensity
to 'Talk'
organisatio
ns used to
target
belief groups
Pensioner
organisation
s
Proposed
Targeting
Activities
Through
media
stories
placed
Objectives
To possible
recruit as a
‘community
champion’
Activities
2011/12
Media
activities
Desired
Change by
2012
Has will
Has plan
Has
discussed
with family
3
Has close
family
members
older
children
Is a carer
Part time
for
partners
Parents alive
Yes
Has a will
No
No. Visits to
a GP per
year
1-4
Advance
care plan
No
Profile: Male 65 – 70 Weak social networks – Better
off
Partner
Via
Focused on close family.
Conservative tastes, enjoys outdoor
activities, bird watching, and
walking. Might now live alone–
could be a civil servant
administrator. Living off good
pension. Worried about illness /
being alone
Media
influences
Daily Mail
BBC
Special interest
Social
Networks /
groups and
clubs
Low
church
Key Messages
Everybody deserves a ‘good death’ and this is
more likely to be achieved by talking about it early
on. A good life needs a good ending; it’s vital that
people talk about their needs and plan their death
with those around them.
organisatio
ns used to
target
commercial
partners,
Solicitors,
GPs,
Libraries
Through
targeted prof
media
Propensity
to 'Talk'
2
Proposed
Targeting
Activities
Has close
family
members
Probably
poor social
networks
Objectives
To begin to
think about
plan
Is a carer
Looking
after
partner
Activities
2011/12
Media
outreach
activity
participant
Parents
alive
no
Has a will
Yes
Desired
Change by
2012
Has advance
care plan
Family know
about it
No. Visits to
a GP per
year
1-3
Has
advance
care plan
No
We have already delivered a wide range of interventions
and tools and we are working on more for all our groups
•
We have produced:
 Materials to encourage conversations
on dying, death and bereavement
 Toolkits for members to support
awareness raising activities
 A website with information on a range
of issues related to dying, death and
bereavement, how to support
conversations and where to go for
further help
 A video
 A lesson plan for schools
•
Held a range of events Awareness
Week to increase media cover and
public attention and Increase Dying
Matters membership
Dying Matters Projects – with NCPC
Working with schools &
hospices young people and
patients working together
“This is the first time our work has ever meant
something to someone else”
“I was really nervous about coming here but it’s really
nice, you kind of forget that people are ill after a while”
“ I look forward to the kids coming, I don’t often get a chance to speak
to people from that generation”
“It’s really nice for the patients but it’s also great for the staff, there’s a
different feel on a Wednesday when you guys come in”
Dying Matters GP Pilot Project
31% of people prefer to
get information about
planning for EoLC from
GP
3 out of 4 GPs agree they
should actively encourage
patients to plan for EoLC
But only:
- 5% of GPs have written a living will or
advance care plan
- 42% have told relatives if they want to
be organ donors
- 23% discussed funeral plans
Helping to deliver : QIPP
Quality: Helping
to ensure that
people get the
best chance of a
good death
Innovation: Developing
new product, services
and support for the NHS
and members
Productivity: Ensuring
Prevention:
Providing practical
tools to help with
Advance Care
Planning and
improving well being
for the bereaved
that best practice results in
better outcomes and more
effective use of services and
Promoting coordination
New products to meet audience
needs
We are developing practical ways
to encourage and deliver
‘Advance Care Planning’
We want to reposition ACP as
something that is easy, valued
and widespread
Planning for a ‘good death’
 Consider legal and financial
matters:
 Making a will, the costs of dying,
insurance, a funeral plan
 Financial help to support you and your
family with care costs, transport
 Consider how you would like to be
remembered:
 What would you like people to know before
you die
 Messages, memory boxes, videos for loved
ones
 Organ donation - saving other lives  Plan your funeral arrangements:
 What do you want, burial, cremation, green
 Make a plan for what you want
funeral, other
when you die:
 Any service, celebration of your life
 The type of care you would like towards
 What songs, messages, themes
the end of your life
 Who do you want to attend
 Where you would like to die
 Whether you have any particular worries  Prepare for bereavement
 If you need help or advice, find out where
you would like to discuss about being ill
to go for support
and dying
 Find out what to do about
 Whether you want to be resuscitated or
legal and financial matters
not
after death
New products to meet Audience Needs
Focus on Advance care planning
(June – July)
Research
(survey, comms &
creative)
(August September)
(October November)
Production
Outreach focus
Internal communications
Enhanced media focus
Updated range
of leaflets
Website
Specific support materials
Using our budget to get value for money:
Little media buying
Use Members as channels
Piggy back on members activity
Use PR to generate awareness
Use media advocacy, and features
A planned and staged approach
Year 1
5
Year 2
Year 3
Year 4
Research
and
programme
Launch
Phase
Coalition development
and new product launch
phase
Embedding and growth phase
Tracking and evaluation phase
Year
Community Outreach Project
GPs, acute
hospitals,
PCTS, SHAs &
NHS
Funeral
directors &
solicitors
Hospices, care
homes &
housing
associations
“If you want to travel
fast, travel alone. If
you want to travel
far, travel together”
Schools , faith
& belief
groups
Working together to raise awareness
Local
Champions
Bereavement
groups
community &
voluntary orgs
NPC and
other
pensioner and
Age orgs
What you can do
Encourage your local
groups to join the Dying
Matters Coalition NOW –
visit
www.dyingmatters.org
Become a local champion raise
awareness in your community
Get your local groups involved
& plan an event in November
‘How people die remains in
the memory of those who live
on’
Dame Cicely Saunders
The North
West
Experience
Dr Andrew Khodabukus
[email protected]
NHS NW Leadership Fellow
in End of Life Care
The Next Half Hour
• What happened in the NW
• The experience
• What this means for the future
The Survey
–
–
–
–
Sent through the end of life networks
27 responses
Details of 26 locations
53 events made contact with 9,038
people
Examples
• Publicity
– BBC Radio Merseyside & Woodlands Hospice
– Manchester Evening News supplement
• Health Organisations
– Grand Rounds
– Hospital Foyers
• On The Streets
–
–
–
–
Halton Haven Hospice Shops
iVAN across the Merseyside & Cheshire Region
Lent Talk by Bishop of Liverpool, Anglican Cathedral
Wirral Older People’s Parliament
Publicity
Responses
• 85% – 90% would use them again
• Broadly suitable for events
• Useful as prompt for discussion
• But
– not diverse enough
– Delivered too close to the time of the events
Future Events
• 68% definitely would do more
– our very small team plan to re do the same every 2-3
months
– National transplant week July 4th 2010 we shall use all the
material for the week within the trust with the donor
information
• The remainder unsure/depended on evaluation
– I would like to think that we will be able to do something
next year, but may need to develop our own information
– No immediate plans, although we will continue to look at
opportunities to heighten awareness of EoL issues
Future Strategy
• Yes it should continue
• Mixed reaction – still a taboo to break –
and that’s just health professionals
• Sustainable – can’t just be a week or an
event
A Good
Start
Know Your
Audience
Success
=
Community
Lost Foundations
Primary
Care
Trusts
Leisure
Clubs
Local
Businesses
Employers
Local Authorities
Care Hospices
Homes
Funeral Directors
Disease
Specific
Charities
Councillors Universities
Schools
Faith
Groups
Trade Unions
Local Radio
MPs
Solicitors
Hospitals
Old Age
Charities
Arts
Groups
You
Television
Family
Public
Gatherings Gatherings
Newspapers
Community
Healthcare
Staff
Compassionate
Communities
• Work of Allan Kellehear
• Community development to provide care
(in its broadest sense) to those community
members who are living with life limiting
illness or dying.
– Teeside
– West Midlands
Asset Based
Community
Development
• Developed in Chicago
– Builds community
capacity
– Glass Half Full approach
to health
– Influenced Obama’s run
to the White House
Conversations for
Life
Key Messages
• Palliative Care services can provide leadership
and start and support community work
• Leading ≠ managing/dominating the process
• Volunteers are key ambassadors in linking
palliative care services with local community
needs and structures
• The result is diverse, rewarding long-term
partnerships
Bruce Rumbold, La Trobe
University, VA, Australia
What Can I Do?
• Book and journal club
discussions (Tuesdays with
Morrie or The Spare Room)
• Café Conversations
(www.theworldcafe.com)
• Film nights that address death
and dying with discussion
afterwards such as The Bucket
List or Tulip
• Identify your local partners
(watch this space for the North
West Guide)
• Share what and how you do
and join up with local health
providers
Acknowledgements
& References
• Asset Based Community Development
– http://www.abcdinstitute.org/about/
– http://www.idea.gov.uk/idk/core/page.do?pageId=18364393
• Compassionate Communities
– Compassionate Cities: Public Health. End of Life Care (Routledge, UK, 2005)
– http://www.latrobe.edu.au/pcu/compassionate.htm
• Conversations for Life
– http://conversationsforlife.com/
• Marmot Review Fair Society, Healthy Lives
– http://www.marmotreview.org/
• With thanks to:
– All who took the time and energy to conduct events for Dying Matters
– The NW Dying Matters Sub-Group – Adrienne Betteley, Julie Foster, Kim
Wrigley & Rock O’Brien
– Keith Aungiers, Steve Conway; Siobhan Horton; Mary Matthiesen; Eve
Richardson, Hilary Fisher & Rose Parker @ NCPC; Edwin Pugh; Bruce Rumbold
DISCUSSION