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Dying Matters . Eve Richardson, Chief Executive The National Council for Palliative Care . North West Event .

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Dying matters l.jpg
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

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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

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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

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Why talk about dying, death and bereavement? in partnership,

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

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Definitions – supportive care in partnership,

Cause of Death

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3 million people will die in the United Kingdom in partnership,

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

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End of Life Care – a few facts in partnership,

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

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Issues to address in partnership,

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

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Success Indicators in partnership,


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


Less fear of death

and the process of dying

Less avoidance of dying people and relatives

Less regrets- no rehearsal


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

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Literature Review key findings in partnership,

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

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Dying Matters in partnership, NatCen Survey - results


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Why don’t we talk about dyin in partnership, g

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

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NatCen Survey Results in partnership,

Death seems a long way off

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Dip ? in partnership,

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Research in partnership, Conclusions

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

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Implications for Action in partnership,

  • 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

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Developed Key Performance Indicators to measure progress in partnership,

Dying Matters Coalition Progress

  • Identified key target groups:

  • 55 – 65 years

  • 65 – 75 years

  • GPs

Developed range of leaflets, poster audio material & a website:


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Dying Matters Awareness Week in partnership,

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

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

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Our Strategy strategy to achieve the Dying Matters Coalition’s aims

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

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Implications for action strategy to achieve the Dying Matters Coalition’s aims

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…”

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Audience segmentation and targeted action for each segment strategy to achieve the Dying Matters Coalition’s aims

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Good Social Networks strategy to achieve the Dying Matters Coalition’s aims

Well off

Less well off

Poor Social Networks

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Profile: Female 60 – 65 strategy to achieve the Dying Matters Coalition’s aimsStrong 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.

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Profile: Male 65 – 70 strategy to achieve the Dying Matters Coalition’s aimsWeak 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


Special interest

Social Networks / groups and clubs



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.

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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

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Dying Matters Projects – with NCPC tools and we are working on more for all our groups

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”

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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

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Quality: to plan for EoLCHelping 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

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New products to meet audience needs to plan for EoLC

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

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Planning for a ‘good death’ to plan for EoLC

  • 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

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New products to meet Audience Needs to plan for EoLC

Focus on Advance care planning

(June – July)


(survey, comms & creative)

(August September)


Internal communications

(October November)

Outreach focus

Enhanced media focus

Updated range

of leaflets


Specific support materials

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Using our budget to get value for money: to plan for EoLC

Little media buying

Use Members as channels

Piggy back on members activity

Use PR to generate awareness

Use media advocacy, and features

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A planned and staged approach to plan for EoLC

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

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Community Outreach Project to plan for EoLC

Local Champions

Working together to raise awareness

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What you can do to plan for EoLC

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

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The North West Experience to plan for EoLC

Dr Andrew Khodabukus


NHS NW Leadership Fellow in End of Life Care

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The Next Half Hour to plan for EoLC

  • What happened in the NW

  • The experience

  • What this means for the future

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The Survey to plan for EoLC

  • Sent through the end of life networks

  • 27 responses

  • Details of 26 locations

  • 53 events made contact with 9,038 people

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Examples to plan for EoLC

  • 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

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Publicity to plan for EoLC

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Responses to plan for EoLC

  • 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

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Future Events to plan for EoLC

  • 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

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Future Strategy to plan for EoLC

  • 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

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A Good Start to plan for EoLC


= Community

Know Your Audience

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Lost Foundations to plan for EoLC

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Primary Care Trusts to plan for EoLC

Local Businesses


Funeral Directors

Local Authorities

Disease Specific Charities

Old Age Charities

Leisure Clubs

Care Homes


Trade Unions



Local Radio







Arts Groups

Family Gatherings

Public Gatherings

Community Healthcare Staff

Faith Groups


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Compassionate Communities to plan for EoLC

  • 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

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Asset Based Community Development to plan for EoLC

  • Developed in Chicago

    • Builds community capacity

    • Glass Half Full approach to health

    • Influenced Obama’s run to the White House

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Conversations for Life to plan for EoLC

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Key Messages to plan for EoLC

  • 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

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What Can I Do? to plan for EoLC

  • 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

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Acknowledgements & References to plan for EoLC

  • 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

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DISCUSSION to plan for EoLC