Despite the fact that we all die, some people seem to have difficulty talking about death and dying.
Final Fling encourages openness about death and dying. We hold Death Cafes, blog on life and death and chat in social about life, death, grief, funerals, bereavement. We aim to normalise it a bit more. We’ve also made a series of films to help share tips on the whys and hows or talking about death – see below.
Taboo or not taboo?
That is the question.
Well, we are Final Fling are not buying it. We think the taboo is disappearing. Here’s why:
- there was a taboo, but it’s disappearing
- death is hidden not forbidden
- the only taboo is in media and medicine
- it’s only conversational unease – euphemism
- it’s individual: some accept other deny death
Our emotional, physical and spiritual wellbeing is improved by thinking ahead and talking openly about life and death decisions – fact! So open up a bit.
One of the best places to talk – custom-built – is a Death Cafe. Join one. They’re informal, friendly, inspiring and surprising, according to our cafe visitors.
The Channel 4 programme My Last Summer shares how it is for people who know they are at the end of life.
Surveys
In an independent survey commissioned by Final Fling, 93% of people said we need to talk about death and dying more. Research by Age UK backs up these findings. 70% of their respondents no longer see funeral planning as a taboo topic of conversation. We’re trying to help challenge any taboo.
Have a look at Final Fling’s films to see what a range of individuals and professionals say about this challenge.
Films
The film Thinking Ahead, Talking Openly was created by Final Fling and the Institute of Research & Innovation in Social Services (IRISS) to recognise the importance of thinking, talking and planning for end of life. Here it is packaged into short chunks looking at different aspects: the need to plan, the benefits of planning, tips on improving skills and more. The simple message is – it’s good to talk.
1) The need to talk about death and dying
Hear from Gemma and Owen, two parents who are thinking and talking about end of life plans for very different reasons.
2) Tips for how to talk about death and dying
Hear from professionals in health and care who deal with death and dying in their role: a hospice social worker, GP, nurse, care home key worker and counsellor. Learn from their experience. Pick up tips for improving skills.
3) Why it makes sense to plan for end of life
4) Issues for children + families
Children and young people, like adults, manage best with honesty. Offer simple and straightforward information. Answer questions. Don’t fudge things using euphemisms. We don’t lose people, they die. It’s worth pointing out comparisons with nature – plants and animals.
Hear from Gemma, a parent whose daughter has a life limiting condition, and her hospice social worker, Jen on their experience of facing and coping with end of life planning.
This film that tells how one family copes with a parent with a life-limiting illness and how each of the family members manages.
by Good Life, Good Death, Good Grief
Children, young people, grown up children, parents, grandparents, partners. We’re all in this together. See Dying Matters’ short film called Dying to Know, exploring the impact of living with dying on one family unit.
5) Health and care professionals’ perspective
It can be just as tricky for professionals to talk about death and dying as the rest of us. Even folk who work in hospices can struggle with it. We’re all human after all. Dying Matters produced this film ‘How Long Have I Got Doc?’ to help GPs have tricky conversations. In our film, we hear from a doctor, nurse and care home worker about their experiences.
See bereavement for more info.
Whose line is it anyway?
Families often think it’s up to medics to do the talking. They may be waiting for you to ask. Responsibility is certainly part of the job for doctors, but when, how and who does it is another matter. GPs may be the starting point on a patient’s end of life journey – but what’s the trigger for the conversation? Getting bloods taken… referral to a specialist… a change in care or treatment… a diagnosis… deterioration… advancing disease… admission to hospital or care home? It’s not clear in the busy-ness of appointments and treatment.
Doctors can’t always be clear about prognosis – their forecast. Deterioration may come faster than expected – an unplanned hospital admission and emergency care may take its toll. ‘Medical activism’ means treatment might continue beyond its real effectiveness and distract the medical team and the patient from recognising that in fact, the end is nigh. Without clear discussion, the patient might assume treatment to manage pain is treatment designed to cure.
The number of people involved in one person’s care doesn’t help. If it’s everyone’s responsibility to talk about death and end of life planning, the buck doesn’t stop anywhere in particular.
Since it can be hard to determine when is ‘now’ – you’d be best advised to take responsibility yourself for asking questions and opening discussions.
See film Having the Last Laugh featuring comedian Alexei Sayle talking with 4 people who are dying about the need to have a laugh.
Hear how some families coping with Alzheimers feel about talking about death in a series of films called Essential Conversations here.
See a short film by the Global Medical News Network where doctors talk about the challenges they face communicating at end of life. Dr Jamie Roenn, leading the discussion reminds us “life has 100% mortality”.
Toolkits
The Conversation Project
The Conversation Project in the States has produced a toolkit to help start having conversations about end of life.
Conversation Project starter kit
My Gift of Grace
A conversation game for living and dying well.
Another team US-side is Action Mill, who have developed a set of cards to help prompt thinking and support conversations about end of life. We thought this was such a great idea that we backed it through the Kickstarter campaign. Read more about it here.