The impact of social attitudes to death and dying: Dying Matters, so lets talk about it! Helping people to talk about and plan for their end of life care Awareness of the impact of taboos associated with death and dying Experience of creating an advance care plan and helping someone else to complete theirs Opportunity to consider what you can do about this as an individual and in your community Awareness of the work of the Norfolk and Suffolk Palliative Care Academy and the Dying Matters campaign Maggie Parsons Programme Lead Norfolk and Suffolk Palliative Care Academy

“Dying is not only a physical event – it is the conclusion of a life defined in its nature, content and connections within a society and its cultures that are every bit as important as the mechanism of how dying happens..” More Care Less Pathway (2013)

“There needs to be a greater understanding of how people who are dying, and their relatives and carers experience care at the end of life; and greater understanding of the social and health effects of different experiences of dying on individuals and on their families..” One Chance to Get it Right (2014)

Why is this important? Changing patterns of death We are all living longer, and need to make the most of our lives without fearing what will happen in the end Most people say they would prefer to be cared for and die in their own home, but most die in hospital People who have discussed and shared their wishes stand a much better chance of having these fulfilled Getting your affairs in order gives you and your family peace of mind and gives you a chance to say goodbye, or heal old rifts

“How people die remains in the memory Its not just about you - it is everybody’s business (Out of the Shadows Azheimer’s Society) “How people die remains in the memory of those who live on.” Dame Cicely Saunders

(The Health Care Commission 2007) 54% of complaints regarding hospital care were related to care surrounding death: “In many cases, families received contradictory or confusing information from different staff caring for a relative. In others, relatives felt that they were unprepared for the death or had no time to arrange for family members to be present”   (The Health Care Commission 2007)

What does good palliative care look like? One Chance To Get It Right (DH 2014) Five new Priorities for Care: The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly Sensitive communication takes place between staff and the person who is dying and those important to them The dying person, and those identified as important to them, are involved in decisions about treatment and care The people important to the dying person are listened to and their needs are respected Care is tailored to the individual and delivered with compassion – with an individual care plan in place

Talking about death and dying.. We think about it a lot.. More than half of people have been bereaved in the last 5 years (54%), with a third thinking about dying every week and 11% think about it daily and yet it remains a big taboo for many to talk about.. But its hard to talk about.. Its worse than talking about money, religion, politics or immigration, but better than talking about sex, well we are British! What worries people? People have concerns about quality of care (59%), being a burden (82%) and about what would happen to family after their death (74%) with 35% saying they would not be able to afford a funeral if someone close to them died tomorrow, 28% would not know what authorities to notify and 24% would not know how to organise the funeral itself Not talking about it can have a lasting impact It has an impact in bereavement as well for example, only 25% of the bereaved feeling they received the support they needed from their employer Com Res/Dying Matters (2012)

Why are people afraid of talking about death and dying? Death is both a physical reality and a social construct Society’s myths to create immortality, a belief in resurrection/life after death, leaving a lasting legacy The fear of our own mortality “We” can challenge these taboos Kate Granger’s blog and campaign #hellomynameis Death café movement four basic narratives: staying alive, resurrection, soul, and legacy: He then begins his exploration of the staying-alive narrative with the story of the first emperor of China and that man’s pursuit of an elixir of life that would allow him to live forever. Cave wraps up with modern techno-optimist and transhumanist ideas of nanotechnology and life extension, revealing their many hidden problems. For the resurrection narrative he begins with the New Testament and Paul’s resurrection of the flesh doctrine, takes us through Mary Shelley’s Frankenstein, analyzes cryonics, and leaves off where Star Trek “beams down” Captain Kirk. All the while Cave exposes the internal contradictions that are rife within any idea of achieving immortality in such a manner. The soul narrative begins with Dante, provides the usual philosophic objections to the very idea of a soul, explores reincarnation, and challenges Buddhism head on, refuting its claim that the soul narrative is not part of its doctrine. This leaves the concept of legacy: living on in the memories of others. Although I’m disappointed that Cave doesn’t note the arguments on this topic so evocatively presented by Cicero in “Scipio’s Dream,” I enjoyed the historical coverage of the immortal aspirations of Alexander of Macedon and the legendary ones of Homer’s heroes. Cave also covers a variation on this narrative, which he calls “biological legacy,” poetically expressed by Albert Einstein when writing to console a friend’s widow. “Our death is not an end if we can live on in our children, for they are us,” Einstein wrote. “Our bodies are only wilted leaves on the tree of life.” But it turns out there’s a dark side to this view, which takes us back to Alexander and the palace murders orchestrated by his mother, Olympias. Once we confront our own mortality, Dr. Yalom writes, we are inspired to rearrange our priorities, communicate more deeply with those we love, appreciate more keenly the beauty of life, and increase our willingness to take the risks necessary for personal fulfillment. Filled with touching personal stories of people who are grappling with the terror of death—including the author—Staring at the Sun offers specific methods to cope with terror and is ultimately life affirming. Most important, Dr. Yalom encourages us to strive for more direct engagement with others. Compassionate connection, combined with the wisdom of the great thinkers who have wrestled with mortality, enables us to overcome the terror of death and lead happier, more meaningful lives.

We need to be brave.. We need to think about what questions to ask We then need to ask them! We cannot help staff caring for us unless we are brave enough to ask difficult questions ourselves: about our own health (or those we care for) about our own care (or those we care for) and about our own needs (or the needs of those we care for), otherwise someone else may make the decisions for us..

The easy bit – making your will Much easier to look after our possessions, but only three in 10 people in the UK have a will – how many here have? In 2011 the Treasury gained £53m from people who died intestate - without a will The year before it was £76m Lets try and make sure the tax man gets less next year!

The hard bit – everything else! Talking about it at work or home Planning for it for yourself or another Making sure you get the care and support YOU want for yourself or for those you love.. Tell the story of organ donors not making a will, altruistic Some people didn’t tell their husbands that they were attending the focus group – see how hard it is.

What do we need to talk about? How we want to be cared for – only 27% have asked a family member about their wishes and only 31% have discussed their own To write this down so that it our wishes can be referred to if we are unable to express them – just 8% have done this Write a will – only 37% have written a will To think about organ donation – only 31% have registered for a donor card How about GPs? Only 35% of those asked had initiated an end of life care planning discussion with their patients and only 33% of GPs have asked a family member about their wishes with only 35% have discussed their own (7% have written them down), although 56% have written a will and 48% have registered for a donor card Com Res/Dying Matters (2012)

When could we talk about it.. Life changing events: Mortgage Marriage/partnership When children arrive/leave the nest Retirement/pension planning Will writing Illness of self or others Bereavement

What is advance care planning? For Yourself For Someone Else For you and your family When Someone has Died www.bereadyforit.org.uk It is an on-going process of discussion, decision making and documentation It is an opportunity for you or someone else to think about current and future care, and to discuss this with the people who are closest to them and or those who provide their care In Norfolk and Suffolk this is called the Thinking Ahead pack

For yourself or helping someone else For Yourself For Someone Else For you and your family When Someone has Died www.bereadyforit.org.uk For example, preferences about: Where you want to be cared for Aspects of care that you are concerned about Treatments you do or don’t want to have People who you wish to be there, or don’t! Who will look after the cat.. You can change your mind, its an evolving process

How do you help someone to do an advance care plan? For Yourself For Someone Else For you and your family When Someone has Died www.bereadyforit.org.uk Listen It takes time: to think about and discuss You can record but only when the person wants to do so

What about.. For Yourself For Someone Else For you and your family When Someone has Died www.bereadyforit.org.uk Do not resuscitate Advance decisions to refuse treatment Lasting powers of attorney

So how can we be ready for it? For Yourself For Someone Else For you and your family When Someone has Died www.bereadyforit.org.uk Start the conversation: At home At work As a neighbour As a member of your community There are lots of resources available

Be ready for it: Checklists and useful information Download the ‘For Yourself Checklist’ and get started today!… Download the ‘For Someone Else Checklist’ and get started today!… Download the ‘When Someone Has Died Checklist’ and get started today!… Download the ‘Your Bucket List Form’ and get started today!…

‘Before I die I want to ….. We are about to launch a ‘Wall’ for people to write a ‘bucket list’ of what they want to do before they die. This is an effort to engage as many people as possible, including young people.

So what do you need to do to be ready? For Yourself For Someone Else For you and your family When Someone has Died www.bereadyforit.org.uk

maggie.parsons@nhs.net GYWCCG.nspca@nhs.net How to contact us maggie.parsons@nhs.net GYWCCG.nspca@nhs.net