dying matters north west event eve richardson, chief executive the national council for palliative...
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Dying Matters
North West Event
Eve Richardson, Chief Executive The National Council for Palliative Care
“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
Only 29% of people talked about their wishes in 2009 - less than in 2006 (34%)
We don’t talk about dying and death - impacting on our end of life choices
500,000 people die each year in England – 60 % in hospitals, yet 70% of people
would like to die at home
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.”
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
Why talk about dying, death and bereavement?
Wider participation in end of life carePeople empowered to campaign for improvements
Reduced feelings of isolationReduced fear of dying Minimising guilt and regret among the bereaved
More people get needs and choices metImproved care becomes a greater priority for the public and for professionals
Definitions – supportive care
Total Deaths = 502,599 England and Wales 2006 (ONS)
34% 28% 14% 19%
3% 2%
0% 20% 40% 60% 80% 100%
Circulatory Disease Cancer
Respiratory Disease Neurological Conditions
Renal Failure Other
Cause of Death
3 million people will die in the United Kingdomduring the next Parliament...millions more will be bereaved...most people won’t die where they want to...
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
The Current Situation:• Only 29% of people talked
about their EoLC wishes in 2009
• 54% of complaints in acute hospitals related to care of the dying in 2007
• 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
The Challenge:• Dementia will rise from 700,000
people currently to 1 million in 2025
• Death rates will rise from 503,000 in 2006 to 586,000 in 2030
• 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?
End of Life Care – a few facts
Words used to avoid saying dying or dead
Issues to address
• Different approaches depending on gender, age, community etc.• expectations of our ‘high Tec society’
Public attitudes and beliefs varied, need to understand & respect diversity of views across communities, generations & cultures
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 mortalityCore training and support for all staff groups
Behaviours• Wishes of dying people
discussed and recorded• Wishes to donate organs
discussed and recorded and more people donating organs-promoting 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
Success Indicators
Our Data and Insight sources
Literature Review key findings
People welcome clinicians who initiate discussion on an advance care plan
Confusion/ contradiction about definitions of death and organ donation.Wide agreement about characteristics of quality care at end of life
Shifting preferences for hospice, home andhospital care related to culture and history
Dying Matters NatCen Survey - results
0
10
20
30
40
50
60
70
80
Medical Spiritual Needs Privacy and peace Dying with Dignity Where I prefer to die
Pain relief None of These
Have you discussed your wishes
Male
Female
70%
47% of men
20% of 75+
3% of 75+
19% of men
43% of women
16% of women
Death is a long way
off
I am too young to
think about it
Why don’t we talk about dying
Death seems a long way off
NatCen Survey Results
Dip ?
• Consensus among the public, across cultures, on factors contributing to good EoLC
• Only 29% have talked about these issues either to family or professionals
• Most research has used surveys- quantitative measures to assess attitudes- providing little opportunity to reflect
• Important since taking part in a study is often rare opportunity to think about EoLC issues
• 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
• Further work on attitudes must be rooted in understanding of the experiences of end of life
• Cultural, history, role of faiths, and peoples meaning and belief systems are critical
Research Conclusions
Implications for Action
Need to use different approaches for different groups, segment audience and approach / materials
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
The “It’s a long way off” perception is keyPeople more likely to talk to trusted family members and GPs
Developed Key Performance Indicators to measure progress
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
Dying Matters Awareness Week
Over 75 events happened across England: conferences, workshops, art displays
Over 30,000 Dying Matters leaflets sent to members
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
Delivering a patient and people driven social marketing
strategy to achieve the Dying Matters Coalition’s aims
Our StrategySpecific 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
Need to use different approaches for different groups, segment audience and approach / materials
Make it easier for more people to talk about it The ‘Its a long way off’, perception is key
“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 Gender Strong social networks
Weak social networks
Better Off Less well off
55-60
60-65
65-70
70-75
Well off
Good Social Networks
Less well off
Poor Social Networks
Profile: Female 60 – 65 Strong social networks - Less well off
Living at home, working part-time. Husband employed in public
services. Engaged with community through work and volunteering
Media influences
Occasional newspaper reader, avoids most
news
Media influences
Occasional newspaper reader, avoids most
news
Social Networks / groups and clubsVia work and other
interestsChurch and other
volunteering activities
Social Networks / groups and clubsVia work and other
interestsChurch and other
volunteering activities
Propensity to 'Talk' 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
Key MessagesEverybody 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.
Key MessagesEverybody 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.
Partner organisations used to target
Faith and belief groupsPensioner organisations
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 willHas planHas discussed with family
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 MailBBC
Special interest
Media influences
Daily MailBBC
Special interest
Social Networks /
groups and clubs
Lowchurch
Social Networks /
groups and clubs
Lowchurch
Propensity to 'Talk' 2
Has close family members
Probably poor social networks
Is a carer Looking after partner
Parents alive
no
Has a will Yes
No. Visits to a GP per year
1-3
Has advance care plan
No
Profile: Male 65 – 70 Weak social networks – Better off
Partner organisations used to target
Via commercial partners,Solicitors,GPs, Libraries
Proposed Targeting Activities
Through targeted prof media
Objectives To begin to think about plan
Activities 2011/12
Mediaoutreach activity participant
Desired Change by 2012
Has advance care planFamily know about itKey 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.
Key MessagesEverybody 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.
• 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
We have already delivered a wide range of interventions and tools and we are working on more for all our groups
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”
3 out of 4 GPs agree they should actively encourage patients to plan for EoLC
Dying Matters GP Pilot Project
31% of people prefer to get information about planning for EoLC from GP
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
Productivity: Ensuring that best practice results in better outcomes and more effective use of services and Promoting coordination
Innovation: Developing new product, services and support for the NHS and members
Quality: Helping to ensure that people get the best chance of a good death
Prevention: Providing practical tools to help with Advance Care Planning andimproving well being for the bereaved
Helping to deliver : QIPP
New products to meet audience needs
We are developing practical waysto encourage and deliver‘Advance Care Planning’
We want to reposition ACP assomething that is easy, valuedand widespread
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 Organ donation - saving other
lives Make a plan for what you
want when you die: The type of care you would like towards
the end of your life Where you would like to die Whether you have any particular worries
you would like to discuss about being ill and dying
Whether you want to be resuscitated or not
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 Plan your funeral
arrangements: What do you want, burial, cremation, green
funeral, other Any service, celebration of your life What songs, messages, themes Who do you want to attend
Prepare for bereavement If you need help or advice, find out where
to go for support Find out what to do about
legal and financial mattersafter death
Planning for a ‘good death’
(June – July)Research
(survey, comms & creative)
New products to meet Audience Needs
Focus on Advance care planning
(October November)Outreach focus
Enhanced media focus
(August September) Production
Internal communications
Website Specific support materials
Updated range of leaflets
Using our budget to get value for money:
Little media buyingUse Members as channelsPiggy back on members activityUse PR to generate awarenessUse media advocacy, and features
A planned and staged approach
Research and programme
Launch Phase
Coalition development and new product launch phase
Embedding and growth phase
Tracking and evaluation phase
Year 1 Year 2 Year 3 Year 4 Year 5
Community Outreach Project
Working together to raise awareness
What you can do
Become a local champion raise awareness in your communityGet your local groups involved & plan an event in November
Encourage your local groups to join the Dying Matters Coalition NOW – visit www.dyingmatters.org
‘How people die remains in the memory of those
who live on’Dame Cicely Saunders
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
Old Age Charities
Local Businesses
Local Authorities Disease Specific Charities
Leisure Clubs
Care Homes
Primary Care
Trusts
Employers
Trade Unions
Funeral Directors
Hospices
UniversitiesCouncillorsSchools MPs
Local Radio
NewspapersTelevisionArts
GroupsHospitals
Solicitors
Community Healthcare
StaffFaith
Groups You
Family Gatherings
Public Gatherings
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