FAQs - Dying Matters

Overview

To support members of the Dying Matters Coalition in their conversations with the media and the public, we have listed below the answers to some of the most frequently asked questions about the Coalition.

This information is for you to use in your press releases, responses or other materials.

If you would like further information about any of the topics included below, or need further information about a related issue, contact the Dying Matters team on freephone 08000 21 44 66 or at info@dyingmatters.org.

What is the Dying Matters Coalition?

Dying Matters is a broad based and inclusive national Coalition set up and led by the National Council for Palliative Care (NCPC) until July 2017 when NCPC merged with Hospice UK. The aim is to support the implementation of the Department of Health’s End of Life Care Strategy. The Coalition’s mission is to promote awareness and support changing knowledge, attitudes and behaviours towards dying, death and bereavement, and through this to make a ‘good death’ the norm.

The Coalition is made up of over 32,000 members. This includes organisations from across the NHS and the voluntary and independent health and care sectors, including hospices, care homes, charities supporting old people, children and bereavement, from social care and housing sectors, from a wide range of faith organisations, community organisations, schools and colleges, academic bodies, trade unions, the legal profession and from the funeral sector.

Working together, members of the Dying Matters Coalition are encouraging people to talk about their wishes towards the end of their lives, including where they want to die and their funeral plans with friends, family and loved ones.

Why has the Coalition been set up?

The End of Life Care Strategy, published by the Department of Health in 2008, identified a number of significant issues affecting dying and death in England:

• Some people die as they would have wished, but many do not. Many people do not die in the place they would choose to, many do not receive quality care at the end of their lives and there are reports that people have not been treated with dignity and respect
• In the past, the profile of end of life care across the NHS and across society has been relatively low, leading to variability in access to and the quality of end of life care across the country and in different communities
• People are uncomfortable talking about dying and death, meaning that when they come to the end of their lives friends and loved ones are not aware of their preferences

The Dying Matters Coalition is part of a wider drive to ensure that all people have access to high quality care and support at the end of their lives, helping people to attain ‘a good death’. This involves improving service provision across the NHS; but to be successful, the attitudes and behaviour of people across society need to change. Dying Matters was set up to promote and support this process.

How many people die each year?

Around 500,000 people die in England each year, and it is predicted that this will rise to 590,000 within the next 20 years. Heart failure and stroke are the biggest killers. One in four people in the UK will die of cancer. With an increasingly ageing population, the majority of older people will be living with a number of conditions. For example, around 30% of people over the age of 85 with cancer will also have dementia.

Where do people want to die?

There is a major mismatch between people’s preferences for where they would like to die and their actual place of death. Our research shows that around 70% of people would prefer to die at home, yet around 60% currently die in hospital.

Does Dying Matters support hospice care?

Yes. Dying Matters fully supports hospice care as it sets a gold standard that needs replicating in care homes, hospitals and all settings.

What is Dying Matters Awareness Week?

The highlight of the Dying Matters Coalition’s calendar is Dying Matters Awareness Week. The Awareness Week involves a programme of events to mark the occasion and is being supported by a national PR and media campaign. Coalition members are supporting Dying Matters Awareness Week in a wide variety of ways, in many places with support from the national Coalition.

Why should I talk about death? Isn’t it morbid?

Not at all. We all live and we all die, and life is something to be celebrated through to death.

Talking about dying and death is something people understandably feel uncomfortable about, but it is something we all need to do - otherwise we, or our loved ones, may not die in the way we want. Talking about dying does not make it happen, or happen faster.

We are all fortunate to live at a time and in a society where most people live healthy lives through to old age. Even a hundred years ago, many more people died at a younger age, they tended to die at home, and more died of communicable illnesses and diseases like tonsillitis and tuberculosis. Increased life expectancy and a steep decline in the numbers of deaths from disease have made death a taboo subject.

Today, many more people live to old age and tend to die outside the home. This means that many people today do not experience a family member or close friend dying until they are into their mid-life, and it is even less common to have seen a dead body.

Society as a whole has never been less exposed to death. As a result, fear of the unknown means that people sometimes avoid people who are ill or dying, and do not feel able to support them.

Not talking about dying and death has many unwanted consequences:

•  If relatives and loved ones do not know a person’s preferences, they may make decisions about care the dying person does not want
• Close relatives may be unaware of how best to help and support a person who is approaching death
• Those nearing death may feel isolated, distressed or frightened, which can impact on the level of pain they experience
• People may die without writing a will, or relatives may be unsure about funeral wishes

When you say that people need to discuss their end of life preferences, what exactly is meant by this?

Dying Matters is encouraging people to communicate their preferences for the end of their lives – what they want to happen when they are approaching the end of their lives, what they want when they are dying, and what they want to happen afterwards.

Broadly, this corresponds to the following questions:

• Where do you want to die? – at home, in a hospice, in a hospital, in a care home, or somewhere else?
• When you are approaching the end of your life, is there anything you want to do? – do you have a ‘bucket list?’
• When you are approaching the end of your life, how do you want to be cared for? – what medical support do you want? Are there any medical procedures or treatments you don’t want? Do you have a preference for who cares for you? Do you want any spiritual support (i.e. support related to meaning and purpose, whether you are religious or non-religious)?
• After you have died, what do you want to happen? – what sort of funeral do you want? Do you want your organs to be donated to help others to live? Do you want to donate your body to science? Have you made a will, is it up to date and where is it?

Why should we join the Dying Matters Coalition?

Joining the Dying Matters Coalition will see your organisation, whatever its size, play a key role in raising awareness with communities.

Members are encouraged to promote the Coalition’s messages in their organisation’s work with the public, and as appropriate through profile-raising events, local media activity and poster and leaflet distribution.

What support do Coalition members get?

Joining costs nothing – and members will get the support they need to organise and run awareness raising activities and events on dying, death and bereavement from the Coalition team, with access to a range of resources, including:

• A regular newsletter
• Responses to Frequently Asked Questions (FAQs) about the Coalition and the issues
• A range of co-brandable materials for use by coalition members, including posters, and leaflets
• Template media materials
• Ideas for events

Who can join? How do I/does my organisation join?

The Dying Matters Coalition welcomes members from across all sectors. Most of our members are organisations (of all sizes) from across the NHS and the voluntary and independent health and care sectors, including hospices, care homes, charities supporting old people, children and bereavement, from social care and housing sectors, from a wide range of faith organisations, community organisations, schools and colleges, academic bodies, trade unions, the legal profession and from the funeral sector.

To find out more about joining the Coalition or to sign up, call freephone 08000 21 44 66 or email  info@dyingmatters.org. You can also join online now by clicking here.

Is this about getting people to plan their funerals/make a will/join the Organ Donation Register?

The most important thing for Dying Matters is that more people talk about and plan for what they want to happen as they approach the end of their lives – for example, what care they want to receive and where they would like to die. Planning a funeral/making a will/joining the Organ Donation Register is part of this, and something the Coalition aims to encourage.

Isn’t this only relevant to people who are terminally ill?

Absolutely not. All adults, whatever age and state of health, should talk about their preferences for end of life care. Talking about dying and death ahead of time ensures that wishes are known and appreciated if the unexpected should happen.

Does the Dying Matters Coalition have an official position on euthanasia or assisted dying?

No. Dying Matters aims to get people to talk about their end of life care – what they choose to talk about during those discussions is up to them. Talking about dying, death and bereavement will help to ensure that more people die in the way they would want.

Members of the Dying Matters Coalition come from a variety of backgrounds and are therefore likely to have a range of diverse perspectives on end of life issues, but what unites us is the recognition that public attitudes towards dying, death and bereavement need to change.