An introduction to Planning for the Last

Years of LifeFacilitators: Debbie Young &

Mireille Haydenwww.gentledusk.org.ukTwitter @gentledusk

Words used to say Death or Dying

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

Planning for the Last Years of Life:

The challenges

“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

The challenges

Talking

Planning

• 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)

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

The challenges

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

Taboos have consequences

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

Benefits of talking about death & planning for the

last years of life

What is planning for the Last Years of Life?

1. Planning for your future care and support (Advance Care Planning)

2. Making a will – planning what happens to your money and possessions; and thinking about Powers of Attorney

3. Recording your funeral wishes – leaving written wishes or making arrangements in advance

4. Considering organ donation5. Talking about it. Make sure your loved

ones know your plans

“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

Dying Well Matters

Advance Care Planning (ACP)

Advance Statement

Advance Decisions to

Refuse Treatment

(ADRT)

• Formalises what someone DOES wish to happen to them

• Can help clinicians in planning someone’s individual care

• Not legally binding

• Formalises what someone DOES NOT want to happen to them

• Legally binding document

• Related to capacity to make decision (Mental Capacity Act)

Lasting Power of Attorney

(LPA)

• Formalises who will make decisions on your behalf

• Legally binding document

• 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

Advance Care Plan: Advance Statement

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

What does an advance statement cover?

Advance Care Plan/ Advance Statement

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?

Advance Care Planning: Key points

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.

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

Organise Powers of Attorney

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.

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.

Make a Will

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

Record funeral wishes

82% of the population definitely 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

Consider Organ Donation

Thank you for attending