Simon Chapman Director of Policy & Parliamentary Affairs 6 May 2010 s.chapman@ncpc.org.uk

1. SUPPORTING END OF LIFE CHOICES WHO CHOOSES WHERE AND HOW TO DIE Simon ChapmanDirector of Policy & Parliamentary Affairs6 May 2010s.chapman@ncpc.org.uk www.ncpc.org.uk

2. ABOUT NCPC • The umbrella charity for palliative & end of life care • Promotes palliative care for all • Influences government policy • Supports all sectors involved in providing, commissioning and using palliative and end of life care services • Provides guidance on best practice (combining evidence with experience) www.ncpc.org.uk

3. OVERVIEW • Supporting choices: looking at the where and the how • Where are we now? • Looking ahead: the coming challenge • Dying Matters – let’s talk about it • Planning ahead & shaping your care • Election day – so there’ll be some polling and voting! www.ncpc.org.uk

4. WHAT DO WE MEAN BY“END OF LIFE CARE”? “End of life care is care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.” End of Life Care Strategy (July 2008) www.ncpc.org.uk

5. END OF LIFE CARE • When does the “end of life” start? • Varies • Last 12 months for some, but can be longer • The “surprise” question can be helpful • Distinguish those “at” from those “approaching” the end of life www.ncpc.org.uk

6. WHERE WOULD YOU LIKE TO DIE? • Care home • Home • Hospice • Hospital • Somewhere else? www.ncpc.org.uk

7. IN FACT.... • NatCen survey: • 70% of people want to die at home • 37% want to die at home “even without access to support ” • Reality: • About 60% die in hospital • Home deaths about 18% and falling www.ncpc.org.uk

8. NOT ALWAYS THE CASE • 1900: about 85% of people died in their own homes, with workhouses accounting for most other deaths • Mid 20th century: about 50% died at home • Early 21st century: acute hospitals have become the most common place of death www.ncpc.org.uk

9. THE COMING CHALLENGE • Most people (60-70%) want to die at home • But most people die in hospital (60%) • Over half (54%) of the most serious complaints about acute hospitals concern end of life care • Numbers of deaths will rise from about 503,000 (2006) to about 586,000 (2030) • Numbers with dementia will rise from 822,000 to over 1 million before 2025 • Life expectancy is increasing at a faster rate than healthy life expectancy • Numbers of home deaths have been falling www.ncpc.org.uk

10. HELP MORE PEOPLE TO DIE IN THEIR PLACE OF CHOICE • Building capacity in primary care and housing to enable more people to die well in the community • Where is home? Care homes; sheltered housing • Key to include: • Training staff in health and social care and housing • Models of care that join-up services • Building community resilience & capacity • Planning ahead together • 24/7 care • Giving people the choice and control they have in other areas of life • And don’t forget hospitals! www.ncpc.org.uk

11. WHY WAS A STRATEGY NEEDED? • Disconnect between where people want to die and where they actually die • Quality: “sub-optimal care” in too many hospital and community settings • Lack of confidence in talking about death & dying – public and professional • Inadequate assessment and care planning • Poor co-ordination of care • Inadequate involvement & support of carers • Lack of dignity & respect www.ncpc.org.uk

12. WWW.DYINGMATTERS.ORG www.ncpc.org.uk

13. COALITION PURPOSES • A vital component of the strategy • To raise public awareness about death dying & bereavement • Dying well to become the norm: part of living well • Raised awareness  changed attitudes  changed behaviour • A 10-year project. Delivering profound societal change • Supporting local and national campaigns • 1st Death & Dying week: 15-21 March 2010 www.ncpc.org.uk

14. BENEFITS TO RAISING PUBLIC AWARENESS • Reduced feelings of isolation • Reduced fears of death & dying • Minimising guilt & regrets amongst bereaved people • Wider participation in end of life care • Empowering people to campaign for improvements • More people get needs & choices met • Improved care becomes a greater priority, and part of everybody’s business • People will approach end of life care in a more confident & well-informed way • For the public & professionals www.ncpc.org.uk

15. Set up by NCPC as a broad based, inclusive Coalition With almost 7,000 members across a range of sectors 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 NCPC as a broad based, inclusive Coalition

16. Audience Question “ Talking about your own death is taboo?” 1 – agree 2 - disagree Do you agree or disagree with the statement: Our ICM Omnibus survey showed: 38% agreed 37% disagreed

17. 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

18. Audience Question Have you written a will? 1 – yes 2 - No Our ICM Omnibus survey showed: 40% Yes, 60% No Our ICM Omnibus survey showed: 19% Yes, 81% No Have you written down preferences around your death? 1 – yes 2 - No

19. MoreSurvey results • Fewer people (29%) talking about their wishes than in 2006 (BBC 34%) • Dying with dignity (i.e. respectful care) is what most people have talked about • Women talk more about their wishes than men • Talking appears to dip in middle years • 75+ talk most about all aspects of death and dying (but conversations are not common) • For those who have not discussed end of life issues main reason (45%) is they think “death is a long way off” - even 20% of the 75+ think this • As people get older they are more likely to say ‘Other people do not want to talk to me about my death’

20. HELPING PEOPLE SHAPE SERVICES & CARE • Policy: personalisation; choice; individual budgets (joining up social care and health); Transforming Community Services • Practice: care plans and advance care planning • Legislation: • Mental Capacity Act • NHS Constitution • In 2013, a right to choose to die at home? • Political: direction of all parties www.ncpc.org.uk

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22. WHAT DOES PERSONALISATION MEAN? • Should not be defined simply by money mechanisms: • personal budgets; direct payments • Non-financial choice as well • Control • Dignity • Being seen and treated as an individual person....“you matter because you are you!” W”w.ncpc.org.uk

23. LIFE THROUGH LANGUAGE • Our roles vary – sometimes we might be called... • Patients • Residents • Carers • None of us likes being called a “user” • We are always... • People • Citizens • For everyone, everywhere www.ncpc.org.uk

24. PERSONALISATION... • Sees people as actively involved co-producers, not recipients • “Fits services around people’s needs, not people to services” • Focuses on outcomes, not existing services Personalising Care; a route map to delivery for care providers The Care Provider Alliance 2010 www.ncpc.org.uk

25. THE IMPORTANCE OF PLANNING “The most important objective is to ensure that people’s individual needs, their priorities, their preferences for end of life care are identified, they are documented, they are reviewed, they are respected and acted upon wherever possible. Now that message has to go out everywhere within the NHS and I think that’s the important starting point for everything else…” Alan Johnson, Secretary of State for Health, speaking on Radio 4’s Today programme at the launch of the End of Life Care strategy, on 16 July 2008 www.ncpc.org.uk

26. HOW CAN PEOPLE USE THE MCA TO EXPRESS/PROTECT THEIR CHOICES IF INCAPACITATED? • Appoint a proxy decision-maker under a Lasting Power of Attorney • Refuse specific treatments in advance • In anticipation of other people assessing their best interests in the future: • Nominate somebody to be consulted (friend/relative) • Identify who should not be consulted • Make written statements about their values, priorities & preferences – these must be taken into account (Advance Care Planning) www.ncpc.org.uk

27. INTERESTED FAMILY, FRIENDS & CARERS • Protected decision-making for all professional and informal carers (if they reasonably believed a person lacked capacity & the act was in his/her best interests) • They must be consulted about the person’s best interests where practicable • Challenge decisions, if felt not to be in best interests • Be appointed as a Lasting Power of Attorney • Apply to beappointed as a Deputyby the court www.ncpc.org.uk

28. PATIENT-CARER RELATIONSHIP • Exploring the relationship between the carer & patient pathways • End of Life Care Strategy; Carers’ Strategy • Is there a duty of care to carers? • Carer wants to plan; patient does not (or vice versa) • Tensions between needs of patient and needs of carer • Guidance on “ethics” decisions www.ncpc.org.uk

29. SPIRITUAL CARE • “There is a piece of work to do on meeting the spiritual needs of those approaching the end of life, their carers and families” (1st Annual Report on End of Life Care Strategy) • Early questions: • Definitions? • Evidence base? • Needs assessment? • Who provides it? • Services in different settings? • Link to Dying Matters: helping people talking about who they are and what matters to them • Linked to bereavement www.ncpc.org.uk

30. BEREAVEMENT CARE • Bereavement is on of the steps on the end of life care pathway • Links with spiritual care • Work now being started by DH • CRUSE has been developing a bereavement care pathway www.ncpc.org.uk

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32. SMALL IS BEAUTIFUL We know that big things, such as funding and training, need to be addressed to ensure that everyone receives good care at the end of their life.....  .....but we’re told time and again that it’s the small things  that make a difference.... www.ncpc.org.uk

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35. WHAT CAN YOU DO? 3 initial suggestions: • Join Dying Matters • Follow the Money - £150 million available in 2010-11 • Co-ordinate your plans with local strategies and services • Think big...and remember the small www.ncpc.org.uk

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