dying matters north west event eve richardson, chief executive the national council for palliative...

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 North West

Experience

Dr Andrew Khodabukusandrew.khodabukus@nhs.net

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

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