Changing Expectations of Death What should we want from the end of life? Cumberland Lodge 23 rd –...

Changing Expectations of Death

What should we want from the end of life?

Cumberland Lodge • 23rd – 25th November 2012

www.dyingmatters.org

What the End of Life should be like

Eve RichardsonChief Executive


Whatever I said I wanted it to be


The challenge

“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


WORDS USED TO SAY

DEATH OR DYING


The Dying Matters Coalition

Set up by the National Council for Palliative Care, the umbrella Charity for all those involved in palliative and end of life care, to support the 2008 End of Life Care Strategy

It is a broad based, inclusive national Coalition, working in partnership, with around 30,000 members from across the NHS and voluntary and independent health and care sectors, LAs, social services, housing, faith, community and retirement organisations, schools, legal, insurance and funeral sectors.

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THE CHALLENGES

TALKING

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 – Natcen 2009 by Dying Matters

PLANNING

Around 500,000 people die each year in England 53 % in hospitals, yet surveys show around 70% of people would like to die at home- whatever home means


WHY WE DON’T TALK ABOUT DYING

19% of men16% of women

Death is a long way off

I am too young to

think about it

47% of men43% of women

20% of 75+

3% of 75+


OUR GREATEST FEAR

How scared are you of the following

happening to you?Dying in pain 83%

Dying alone 67%

Being told you are dying 62%

Dying in hospital 59%

Compare with:Going bankrupt 41%

Divorce/end of a long-term relationship 39%

Losing their job 38%Comres 2011


Qualitative Research


IMPLICATIONS FOR ACTIONS

Communication is the key needed to make it easier for more

people to talk about death and dying

The “It’s a long way off” perception:People more likely to talk to trusted family members and GPs

Different Approaches/toolsNeeded for different groups/audiencestarget groups: 55 – 65s 65 – 75s GPs


Community Group Members• Local Hospices• Funeral, legal, Insurance, finance services• Local Age Concern, pensioner orgs Nursing &Care Homes• Housing Associations• Local Authorities•PCTs• Schools• GPs, Carers • Acute hospitals• Community Champions•Faith &belief Groups• Bereavement groups•Coroners, police

Outputs• Local network of engaged organisations• Supporting materials encourage future planning• Local events and open daysHigher profile for Dying well

Outcomes• More conversations leading to more planning, including PPC and ACP• More DM members • Greater priority for end of life care

Community DevelopmentProgramme

Impact• More people’s wishes are met• Improved end of life care


Changes in GPs confidenceChanges in confidence in having conversations of all GPs participating

in the Dying Matters GP Pilots 2010 & 2011


What’s Happening in Lewisham?


DYING MATTERSPROJECTS WITH NCPC

Working with schools & hospices

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“I was really nervous about coming here but it’s really nice, you kind of forget that people are ill

after a while”

“This is the first time our work has ever meant something to

someone else”

“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”

“ I look forward to the kids coming, I don’t often get a

chance to speak to people from that

generation”

www.ncpc.org.uk www.dyingmatters.org

Working with Communities to develop Messages


DYING MATTERS COMMUNITY

Easy to use• Simple registration process• Offers forums, blog, share your event/story• Users can post comments in forum and blog

You can:• Register & post comments • Add links & buttons to your websites • Provide expert comment/ opinion • Join DM Twitter & Facebook


CO

ALIT

ION

OF IN

TER

ES

TS

W

OR

KIN

G T

OG

ETH

ER

“Dying is an art, like

everything else, I do it

exceptionally well.”

Lady Lazarus by Sylvia Plath

Planning for a ‘good death’ includesLegal and Financial Matters

Making a will, insurance, cost of funeral

Organ Donation – save other lives

Preferences

Type and place of careWorries, family issues to address Resuscitation decisions

Funeral Arrangements

Leaving a Memorial / Legacy

Preparing loved ones for bereavement

What would you like people to know before you die?


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The Funeral Wishes Form

Spiritual wishes matter too - what ever your faith or belief


Barack Obama:

“He transformed our lives, redefined entire industries,

and achieved one of the rarest feats in human history:

he changed the way each of us sees the world.”


What You Can Do

Changing Expectations of Death What should we want from the end of life? Cumberland Lodge 23 rd –...

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