Dying Matters

1. 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

2. 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

3. 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

4. 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

5. Definitions – supportive care Cause of Death

6. 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... 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

7. End of Life Care – a few facts 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? 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

8. Words used to avoid saying dying or dead

9. 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

10. Success Indicators 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 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

11. Our Data and Insight sources

12. Literature Review key findings 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 People welcome clinicians who initiate discussion on an advance care plan

13. Dying Matters NatCen Survey - results 70%

14. Why don’t we talk about dying Death is a long way off I am too young to think about it 47% of men 20% of 75+ 3% of 75+ 19% of men 43% of women 16% of women

15. NatCen Survey Results Death seems a long way off

17. Dip ?

18. ResearchConclusions 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 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

19. 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

20. 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

21. 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

22. Delivering a patient and people driven social marketing strategy to achieve the Dying Matters Coalition’s aims

23. 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

24. 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…”

25. Audience segmentation and targeted action for each segment

26. Good Social Networks Well off Less well off Poor Social Networks

27. 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 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.

28. Profile: Male 65 – 70 Weak social networks – Better off 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.

29. 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

30. 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”

31. 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

32. 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 Prevention: Providing practical tools to help with Advance Care Planning and improving well being for the bereaved Helping to deliver : QIPP Productivity: Ensuring that best practice results in better outcomes and more effective use of services and Promoting coordination

33. 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

34. 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 • 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 matters after death

35. New products to meet Audience Needs Focus on Advance care planning (June – July) Research (survey, comms & creative) (August September) Production Internal communications (October November) Outreach focus Enhanced media focus Updated range of leaflets Website Specific support materials

36. 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

37. A planned and staged approach Year 1 Year 2 Year 3 Year 4 Year 5 Research and programme Launch Phase Coalition development and new product launch phase Embedding and growth phase Tracking and evaluation phase

38. Community Outreach Project Local Champions Working together to raise awareness

39. What you can do Become a local champion raise awareness in your community Get 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

40. The North West Experience Dr Andrew Khodabukus andrew.khodabukus@nhs.net NHS NW Leadership Fellow in End of Life Care

41. The Next Half Hour • What happened in the NW • The experience • What this means for the future

42. The Survey • Sent through the end of life networks • 27 responses • Details of 26 locations • 53 events made contact with 9,038 people

44. 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

45. Publicity

46. 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

47. 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

48. 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

49. A Good Start Success = Community Know Your Audience