A Guide to Planning for the Last Years of Life with Gentle Dusk

1. An introduction to Planning for the Last Years of LifeFacilitators: Debbie Young & Mireille Haydenwww.gentledusk.org.ukTwitter @gentledusk

2. Words used to say Death or Dying

3. There are over 200 euphemisms for death in the English language The practice of using euphemisms for death is likely to have originated with the belief that to speak the word “death” was to invite death This highlights that death is a taboo subject in many English-speaking cultures

4. Planning for the Last Years of Life: The challenges

5. “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

6. The challenges Talking • We don’t talk about dying and death - impacting on our end of life choices • Only 21% of people have talked to someone about their wishes (2014) • 63% of people would prefer to die at home and 27% in a hospice (2014) • In Westminster, 49% of people die in hospital, 26% die at home, 11% in a hospice and 10% in a care home (2014) • Only 6% have written down wishes about the care they would want (2014) Planning

7. The challenges People in Britain risk not having their end of life wishes met. New ComRes market research released for the start of Dying Matters Awareness Week 2014 found: • Just 36% of people say they have made a will • 29% have let someone know their funeral wishes • 6% have written down wishes and preferences about the care they would want • 34% are on the Organ Donor Register

8. Taboos have consequences • Deciding not to talk is just that – a decision.... • If we don’t discuss, anticipate and plan, it makes unplanned “crisis care” and hospital admission more likely • Our families may not know what we want • Our carers may not know what we want: • Own home or care home • Shower or bath • Marmite or marmalade • Mozart or Motorhead

9. Benefits of talking about death & planning for the last years of life Reduced worry and anxiety about the future We feel more in control of our future – more empowered It helps to ensure our needs and choices are met at the end of our life – die in the place of choice Less crisis and unwanted hospital admissions Reduced conflict between family members Reduced fear of dying or other people dying Minimise guilt and regret among the bereaved. Helps the grieving process

10. What is planning for the Last Years of Life? • Planning for your future care and support (Advance Care Planning) • Making a will – planning what happens to your money and possessions; and thinking about Powers of Attorney • Recording your funeral wishes – leaving written wishes or making arrangements in advance • Considering organ donation • Talking about it. Make sure your loved ones know your plans

11. Dying Well Matters “Many people feel frightened to talk about death for fear of upsetting the person they love. However, it is essential that people do not leave it until it is too late. Planning for needs and wishes helps the person to feel in control, it helps those they leave behind and facilitates the implementation of the care they wish to receive.” Macmillan GP

12. Advance Care Planning (ACP)

13. Formalises what someone DOES wish to happen to them • Can help clinicians in planning someone’s individual care • Not legally binding Advance Statement Advance Care Planning • Formalises what someone DOES NOT want to happen to them • Legally binding document • Related to capacity to make decision (Mental Capacity Act) Advance Decisions to Refuse Treatment (ADRT) Lasting Power of Attorney (LPA) • Formalises who will make decisions on your behalf • Legally binding document

14. Advance Care Plan: Advance Statement • It is a voluntary process, so there should be no pressure from professionals, organisations or family, though their support may be what makes the completion of an ACP possible • The content of any discussion should be what the individual wants it to be. • It may benefit from being carried out and from developing and being reviewed over a period of time. • It is not legally binding

15. What does an advance statement cover? An advance statement can cover any aspect of their future health or social care. This could include: where they would like to be cared for, for example at home or in a hospital, nursing home or hospice how they like to do things, for example if they prefer a shower instead of a bath, or like to sleep with the light on how they want any religious or spiritual beliefs they hold to be reflected in their care concerns about practical issues, for example who will look after their dog if they become ill

16. Advance Care Plan/ Advance Statement

17. Advance Care Planning: Key points We are all special, we all have ideas about what we want or don’t want for our future care and end of life care. If we want these wishes and preferences to be taken into account we need to express them, write them down and share them. Why should we write them down? Why should we share them? We can all do it at any time, any age Like a will, it needs updating if circumstances change It comes into play when we lose capacity Losing capacity?

18. Organise Powers of Attorney A Lasting Power of Attorney (LPA) is an important legal document that enables a person who has capacity and is over 18 (Donor) to choose another person or people (Attorney/s) to make decisions on their behalf. There are 2 different types of LPAs: A property and financial affairs LPA is for decisions about finances, such as selling the Donor’s house or managing their bank account. You can appoint someone to look after your property and financial affairs at any time.

19. Organise Powers of Attorney A health and welfare LPA is for decisions about both health and personal welfare, such as where to live, day-to-day care or having medical treatment. This lasting power of attorney can only be used when you’re unable to make your own decisions. How do you complete a Lasting Power of Attorney? Online - http://www.justice.gov.uk/about/opg Use a solicitor

20. Make a Will • Writing a will allows people to plan what happens to their money and possessions after they die. • Someone can make a valid will if they have the mental capacity to do so. The capacity required includes the capacity to understand: • the nature of the document being written, • the extent of the property/items to be disposed of, • the claims of those to be benefited by, or excluded from, the will. • If in doubt, the test of mental capacity to make a will is a legal test and a solicitor with experience in this area should be consulted.

21. Make a Will If someone dies without a Will the distribution of their assets is determined by law, using a strict set of rules, rather than the person’s wishes. This is known as “Intestacy Rules”. The Intestacy Rules lay down a strict formula stating how assets will be divided amongst the nearest surviving relatives. If no relatives then the crown ultimately takes the assets.

22. Record funeral wishes • Almost 1 in 5 people struggle to pay for a funeral. Yet our fears and taboos around death and money make funeral poverty something we don’t talk about. • An average burial in London costs £6, 368 • Record funeral wishes • Burial vs cremation • Plan the ceremony – religious/non-religious, songs, words and actions

23. Consider Organ Donation 82% of the populationdefinitely want to donate, or would consider donating, their organs but only 50% have talked about it with their families; Only 31% of families would agree to donation going ahead if they are unaware of their loved one’s decision; On average 3 people a day die in need of a transplant because there are not enough organs available; One year – on average, patients from Black, Asian and Minority Ethnic communities will wait a year longer for a kidney transplant than a white patient. Register online at www.organdonation.nhs.uk

24. Thank you for attending