#InAGoodPlace: Preparing for death, dying and bereavement
What does it mean to be in a good place to die? This is the question we were asked to consider during Dying Matters Awareness Week (10-16 May 2021). Pilgrims staff share their thoughts, both from a personal perspective and based on their experience working alongside hospice patients who are approaching the end of life.
Oden, Physiotherapist
For me, being in a good place to die means being at peace.
As a society, we’re not encouraged to think about our death even though it is probably going to be one of the most important experiences of our life. People often say, ‘Stop being morbid’ or think it’s bad manners to talk about death, or that by talking about it we will “tempt fate”, but the truth is we were always going to die. Then because we have lived our lives as if it was never going to happen, we are in denial and often completely unprepared – both for our own death and the deaths of those we love. We don’t know how to cope because it’s all done behind closed doors, and as such it can make the unknown a fearful experience.
We need to talk more about dying so that we can support our hospice patients and their loved ones, and also cope when we eventually experience it for ourselves.
As a Buddhist nun, I contemplate my own death each day for two reasons; firstly, I will not be surprised if it happens suddenly, and secondly it helps me to appreciate each day. In this way, I hope my mind will be more peaceful and I will therefore be in a good place to die.
Justine Robinson, Lead Occupational Therapist
For some people, a good place to die might mean being able to stay in their own home. Occupational Therapists can help hospice patients plan for this by adapting the environment and providing specialist equipment to help them remain at home. They work alongside patients and families to enable them to continue doing the things that matter most to them for as long as possible.
Having a life limiting illness often leads people to reflect on what they will leave behind. As well as material objects, this could also include memories, precious moments and the things that make you, you. The legacy work we do at Pilgrims is a way of turning some of these thoughts into actions or tangible keepsakes. It not only gives loved ones something precious to hold on to, but can also provide patients with the time and space to reflect; they can find peace and meaning while coming to terms with dying.
Pilgrims’ Wellbeing team work with patients and families to create legacy projects. This can take many forms, including memory boxes, writing, arts and crafts and recording stories as part of our Blackbird Project. Whatever a patient chooses will become unique to them, carrying the meaning they put into it.
Martyn Yates, Spiritual Care Lead
What does it mean to have a ‘good death’? What does it mean to be in a ‘good place’ to die?
Death and dying is as individual as each one of us. If we don’t acknowledge that we are all going to die at some point and we don’t talk about it, we will probably find it hard to start those important conversations, have a ‘good death’ and be in a ‘good place’ when we die.
World War I saw the deaths of hundreds of thousands and immediately after that we had the Spanish Flu, which killed some 200,000 in the UK. Then came World War II, when almost every family lost someone. Finally, in the late 60s Hong Kong flu killed some 80,000 in the UK. We stopped talking about ‘death’ and started using phrases like ‘they passed away’ or ‘popped their clogs’. It is as if we have gone into a collective silence about death and have handed it over to ‘the professionals’.
As Baroness Julia Neuberger has said: “We need to learn to look death in the face again – it is coming for us all.”
That is why I see things like theDeath Cafemovement and Hospice UK’sLet’s talk about dyingprogramme as beneficial. Talking about death and dying doesn’t bring death closer. It’s about planning for life, helping us make the most of the time that we have – it’s about celebrating life.
We plan for and celebrate every birth, so why not do the same for every death?
Dying Matters Awareness Week is a chance to come together and open up the conversation around death, dying and bereavement.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
9th January 2020
How to plan a funeral on a budget
Dealing with the death of a loved one can be very difficult, no matter what your circumstances are. The rising cost of funerals means many families simply don’t have the money to cover the cost.
Abi Oborne, former Education Officer at Pilgrims Hospices, looks at the options available to plan a funeral on a budget.
At Pilgrims, we want to help those in our community access all the information they need to help them deal with issues around death and dying, no matter their financial circumstances.
I hope that this blog can give some simple ideas of how a funeral can be more affordable, helping to point families in the right direction in terms of seeking more in-depth support and advice.
It’s important to remember that how much you spend on someone’s funeral is not a measure of how much they are loved or valued by you.
Abi Oborne, Pilgrims Hospices
In 2018,the average price of a funeral was around £3,757; many families in Britain are struggling to meet the cost. It can be particularly difficult when a death is sudden or unexpected, or when a family are already struggling on a low income but still want to give their loved one the best send-off they can manage. Here are some ideas for keeping the cost of a funeral down and what you can do if you’re unable to pay for a funeral.
Money isn’t everything
First of all, it’s important to remember that how much you spend on someone’s funeral is not a measure of how much they are loved or valued by you. There are ways that you can celebrate their life without getting into debt and there is help out there to guide you.
A first step might be to phone the Down to Earth advice helpline who can talk you through your options if you are struggling to finance a funeral. You can contact them on 020 8983 5055.
If there are no funds at all to pay for a funeral
If somebody dies and no one is able to pay for their funeral, it is the local authority’s responsibility to carry out a burial or cremation. This will generally be an unattended simple burial in a council-owned and managed cemetery. Some local authorities will use a crematorium instead of burial. In most cases, the grave will be unmarked, the burial unattended and there could be some delay in arrangements.
To find out more about this option it is best to contact your local council.
The Children’s Funeral Fund
There are specific funds available to help cover some of the cost of a child’s funeral if they were under 18. Check out the UK government’s Children’s Funeral Fund webpage for more information.
Getting a grant to help cover costs
There is a grant available from the Department for Work and Pensions (DWP) to help families on benefits pay for a funeral. Families can receive up to £1,300 depending on their circumstances. You can find out more about whether you might be eligible for this help on the UK government’s website.
Asking friends and family to help cover the cost
There is no shame in asking others to help and it is quite common now for people to set up online fundraisers to help in paying for a funeral. You could set up a GoFundMe memorial fundraising page and ask for people to contribute to the costs instead of sending floral tributes. People are often glad to help in some way and would like to support you.
Burial or cremation?
Burials cost considerably more than cremations; depending on your location and the services available, a burial can cost around £1,000 more. According to moneyadviceservice.org.uk, the average cost for a funeral involving a burial is £4,267 whereas the average cost for a funeral with a cremation is £3,247.
It’s worth looking at different options for burials. There are now many natural burial grounds that have reasonable prices and offer tree saplings, wildflowers or carved wooden markers for graves instead of more expensive headstones. These options also reduce the cost of grave maintenance for family members and loved ones.
Separating the burial or cremation from the service or celebration of life
Another way that families can keep costs down is by separating the celebration of the person’s life / their funeral service from the actual burial or cremation. A cremation can be unattended (this is called a direct cremation) and then the celebration or service can be held with the returned ashes instead of the coffin.
Direct cremation (Cost: £1,000 – £2,000)
In a direct cremation, your loved one’s body is taken to the crematorium in a simple coffin and their ashes are returned to you. The cremation will be unattended, and the time and day will be chosen by the crematorium, not by you.
A direct cremation is now widely offered by local funeral directors but does vary in price quite considerably, so it’s best to phone around to find out how much each will charge for a direct cremation and exactly what is included in that price. Ask if the price is totally inclusive or if there will be anything extra to pay for. This is a job you could ask a friend to do for you / with you as it can be quite overwhelming reading through a breakdown of prices, and it can also be hard to have to explain your situation over and over again. Lots of funeral directors offer a breakdown of their prices on their website so you can see quite clearly what you are paying for.
There are also some national companies that offer a direct cremation service. They will generally pick up your loved one’s body from the hospital or your home within a short period of time and return their ashes in around a week, although it is best to speak to the company directly about the details.
Celebration of life / memorial service
If the burial or cremation of the body is separate from the celebration or memorial service, the latter could then take place anywhere from a person’s home or garden to a local church or function room at a favourite pub, village hall or outdoor venue. This could essentially work as a service and wake combined, by doing something as simple as a celebration at home with the person’s favourite meal and a chance to chat over old photos. Or it could be a service led by a friend, family member, local vicar or celebrant. Your local vicar would hold a funeral or celebration service with the person’s ashes in your local church and the cost would be around £200.
The more you can do yourself, or by asking for help from friends and family, the more the costs can be kept to an affordable level. People often rally to help when somebody dies; some might get in touch and say, ‘Is there anything I can do?’ At this point, you could say yes and ask if they can bake a cake or make a tray of sandwiches to bring to the celebration. A friend with a computer and printer could help with the order of services and invitations to the celebration or could send invites out for you via text or email.
DIY funeral
Some people decide that they would like to arrange their loved one’s whole funeral themselves. This will include care of the body and transporting the body to the place of burial or crematorium, which can be done using an estate car or a larger vehicle. There will also be a lot of paperwork to manage. This option cuts out the cost of a funeral director entirely and will save you a great deal of money, however you will need some support to manage everything. Although DIY funerals are not very common, they can be done. Resources and advice are available from the Natural Death Centre if you would like to find out more about this option.
A traditional funeral: How to keep the cost down
After looking at all the options, you may decide on a more traditional funeral. This will cost around £3,500 or more depending on what your wishes are. To keep the costs manageable, it is a good idea to compare the prices and services of several different funeral directors to see what you feel most comfortable with. Be direct with the funeral director about what your budget is and don’t feel pressured to spend more than you can afford.
You could keep things very simple – no extra cars, just ask people to meet at the funeral venue. Instead of floral tributes, perhaps everyone could bring one bloom to place on the coffin in the service. You could ask friends and family to help you put on a simple funeral tea at home after the service.
Ask for help and support
Ultimately, don’t feel you have to plan a funeral on your own. There is support and advice out there to help you manage this. Invite a friend over to make the tea while you call advice lines and get all the information you can.
Remember: You are not alone if you’re struggling with the cost of a funeral.
Abi
A note from Abi:
“When researching this blog, I spoke to several local funeral directors and services. They were all very understanding and not at all judgemental about the difficulties many families face when paying for a funeral. Most were happy to talk openly about money and to be flexible with the services they can offer.
Remember: You are not alone if you’re struggling with the cost of a funeral.
This is a problem we face as a whole society, due to families trying to get by on lower incomes whilst managing the rising costs of living. The price of a funeral has increased dramatically in the last ten years. With fewer people able to save and buy property, or having to use the value of their property to pay for their care, budgeting for a funeral and knowing your options will become ever more important.”
Abi Oborne was the former Education Officer at Pilgrims Hospices.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
14th November 2019
How can we help children to understand and talk about grief?
We all experience death, dying and grief differently. When a loved one dies, children may find it particularly difficult to express themselves and understand what has happened.
Here, Stacey Hart from child bereavement charity Grief Encounter explains how children understand death and what can be done to help them find light and meaning in grief.
What is Grief Encounter?
At Grief Encounter, we support children and young people through bereavement to alleviate the pain caused by the death of someone close. Rebuilding a new life after the death of a loved one is hard, especially for children; they have an overwhelming sense of confusion, fear and anxiety alongside their grief.
We estimate that in 2015, 23,600 parents died in the UK leaving dependent children. That’s one parent every 22 minutes, and 112 newly bereaved children every day.
Stacey Hart, Grief Encounter
A child’s parent or sibling dying will essentially mean the death of somebody young who hasn’t lived a full, long life:
How can a child accept the fact that Mum died suddenly when they were 12?
Can a child ever accept at 22 that their father will never meet their fiancé or kiss their children goodnight?
No one knows exactly how many children are bereaved each year. Data is collected annually on the number of children affected by the divorce of their parents, but not on the number affected by the death of a parent. We estimate that in 2015, 23,600 parents died in the UK leaving dependent children. That’s one parent every 22 minutes, and 112 newly bereaved children every day.
How children understand death
Children and adults understand death in very different ways. As children grow and mature, their earlier ways of thinking about death will change, too. It is essential for adults to have a sense of how children conceptualise death at different ages, so that when the time comes to talk about it they can respond in an appropriate way for the child’s developmental age.
The age groups below are not intended to be exact, but rather representative of the differing developmental stages. As a child gets older and their perception of death changes, understanding these stages is crucial to giving children and young people the right kind of support.
0-2 years old
Up to the age of two, a child will have little to no understanding of death, although they can perceive emotions such as the grief of people around them. From two onwards, children start to grasp the concept of a person dying, even though to begin with they don’t understand its permanency.
2-5 years old
Children aged 2-5 can vary enormously in their understanding of the world and death. Most likely they will know the words ‘death’ and ‘dying’ but will probably still not have a real understanding of its permanence. They might imagine the dead person can return or that they are in an actual physical place, like heaven. Generally, there is no concept of a personal death; death is something that only happens to other people. They may start to express concerns that significant adults will also die.
5+ years old
As children get older, they begin to grasp the finality of death and may develop an increased interest in the physical and biological aspects of death. But this increased factual understanding of death is often mixed with fantasies such as a preoccupation with skeletons and ghosts. “Magical thinking”, believing that thoughts can make things happen – like accidents and death – can be confusing and frightening at this time.
Teenagers
Teenagers will most likely be characteristically unpredictable and volatile in their responses to hearing that a loved one has died. Some may want to be close to family, ignoring school and social lives. Others may distance themselves in a way that can feel hurtful and rejecting. Their peer group can be very important and ‘acting out’ behaviours can be worrying for caregivers. It is important to give young people space to process their changing emotions whilst trying to maintain the usual boundaries and rules that will help them to feel safe at such a confusing time.
Being honest with children in an age-appropriate way is generally the best approach, as vagueness can lead to fears that something worse is being hidden from them. It’s also important for children to witness people grieving and displaying their emotions. Showing that it’s OK to cry is good for children, otherwise they hold in their feelings. For example, if Dad has died and they see Mum keeping a stiff upper lip, they might think they have to as well, believing that it’s not OK to show your feelings.
Deborah’s story
Deborah was 35 her husband John died at just 34 years old. They have three children together: Josie, 11; Harry, 8; and Darcy, 3.
John was a doctor. One day in April 2017, he collapsed unexpectedly at the gym. He was in a coma for a week before he died in hospital. Deborah was on maternity leave at the time from her job as a graphic designer.
To say our lives have been turned upside down, inside out and scrunched up is an understatement. But as a family, I want to show the children that there is still a life to be had, and that John is very much at the heart of our family.
Deborah
The day John died, Deborah had been wondering where he was; she was unable to reach him and he was late to return home. When the hospital called her mobile, she was out shopping with the children. At first, she had no idea what had happened and the hospital wouldn’t explain over the phone. She hurried there to find him in a coma.
The family has been working with Grief Encounter since 2017, attending group workshops, receiving counselling and enjoying fun days. They feel that this support has been invaluable. The children feel less alone whilst trying to adjust to life without John. Everyone has space to reflect on how they feel and to share and hold on to their memories. Deborah explained:
“To say our lives have been turned upside down, inside out and scrunched up is an understatement. But as a family, I want to show the children that there is still a life to be had, and that John is very much at the heart of our family. Grief Encounter has helped and is helping us all to do that.”
From acceptance to adjustment
The word ‘acceptance’ is frequently used to define the last stage of grief. It is often believed that this is where we are supposed to get to after we have experienced the many different emotions on our grief journey. We must manage expectations. Of course, we need a positive outcome for our children and young people. So we change the word ‘acceptance’ to ‘adjustment’. This way, we can acknowledge that life will never be the same, that there will be lots of changes and new normals. The term ‘adjusted’ should alleviate the pressure for the bereaved. It’s OK to feel angry, sad, guilty and know that this is perfectly normal.
Helping children to find light in grief
What positives are there when a child or young person experiences the premature death of a parent or sibling, considering that it is a time when most children will be hard pushed to find any light? We all know sayings like, ‘When life gives you lemons, make lemonade.’ They exist to encourage optimism and positivity. So, what can be helpful and positive about premature death?
There is a need for bereavement counselling. Children and young people need a safe space, a place where they can express themselves. Following a death, counselling will help address a multitude of issues and help to promote healing.
Meaning and appreciation
When you’ve been through the devastation and loss of a parent or sibling and suffered unimaginable loss, you can learn not to sweat the small stuff, appreciate the present and be mindful. This experience can give you the ability to determine what is really important in life.
Memory boxes
A memory box can be a great way to collect and store precious things relating to the loved one who died. The box can be filled with treasured items like photos, letters, jewellery – anything that reminds you of the person.
Each item will have a special memory attached to it. The box can be used as an opportunity to have conversations, share memories and reflect on the person who died.
In addition, there are a range of other ways to stay connected to your loved one:
Talking to the person who died is something many grievers do; it can bring a lot of comfort during the moments you miss them most.
Keep their photo around. This often helps you remember how that person continues to influence your life.
Include them in events and special days, acknowledging birthdays and anniversaries.
When faced with tough decisions, imagine what advice they would give you. Visualise a conversation with them, what they would have said, to help you make big life choices a little easier.
Keep something that belonged to them or that they gave you. You can’t keep everything (even though sometimes it is very hard to part with belongings) but choosing a few meaningful items can be extremely powerful.
Experience their presence. It is common to feel a loved one’s presence, though not everyone does.
Stacey Hart is a Training Manager and Trauma Specialist at Grief Encounter. She has been a counsellor and trainer for more than 15 years, always working with child-focused organisations. She has a wealth of knowledge on child bereavement, specialising in critical incident and working with trauma.
Grief Encounter has more than 90 therapists and offers tailored services to different age groups and needs, including:
Online counselling
Kits with toys and memory-making materials for younger children
Face-to-face sessions
Group family workshops
It also offers full bespoke training for professionals.
Grief Encounter’s free confidential helpline grieftalkis open Monday to Friday, 9am to 9pm, on 08088 020 111.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
14th August 2019
The Life of Death: A beautiful meditation on living and dying
The Life of Death is a short animation that follows Life, personified as a doe, as it encounters Death, a ghostly character who nevertheless turns out to be kind, caring and compassionate. Initially fearful, the doe tries to avoid death, but finally comes to accept its essential relationship to life and recognises that this is natural, not scary.
Here, animator Marsha Onderstijn explains how she came to make the film and why she chose to focus on the universal themes of life and death.
Why did you want to make an animation about life and death?
The Life of Death was my graduation film at the AKV St. Joost Art Academy in the Netherlands. I decided on the theme of life and death, because it is such a universal topic. Even without any dialogue in the animation, it would be recognisable to anyone in the world. I wanted to express my own views on life and death by packing it up in a small and, hopefully, endearing story.
Death is a theme that has been endlessly explored in art, religion and philosophy. Very often, death is portrayed as something scary and evil, but even as a child I could never understand why people were so afraid of death.
To me, death is simply part of life.
That is why I decided to make Death the protagonist of my animation, which gave me the ability to show him in a different light. I wanted the audience to relate to Death, to feel for him and wonder if maybe he isn’t all that bad.
Do you think nature and the natural world can help us to process and understand death?
I think so!
Death happens all around us in nature, all the time. To me personally, there is a lot of acceptance of death in nature, because it seems it is simply part of life.
How has The Life of Death been received since its release?
I’m amazed at the incredible response The Life of Death has gotten. To this day, I still get messages from people all over the world, writing about how my animation has changed their view on death, or how it helped them grieve, or how it made them be less scared of death. Some people have played it at their funeral. Some people use it in class to help discuss death with children.
Marsha Onderstijn
It is humbling and amazing, because I would never have thought my animation could have such an impact.
What is your best life advice, given that death is inevitable?
I think one can only talk in clichés when it comes to life advice, but that doesn’t mean they’re not true: Be kind to yourself and others. Do what you love. Be yourself. And enjoy the NOW!
Marsha Onderstijn is an animator from the Netherlands. She studied Animation at the St. Joost Kunstacademie in Breda, specialising in 2D animation. Since graduating in 2012, she has worked as a freelance animator and storyboard artist on both commercial and independent projects.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
9th May 2019
Cry, Heart, But Never Break: Talking to children about life, love and loss
Cry, Heart, But Never Breakis a children’s book that explores death, dying and grief through three young children – Nels, Sonia and Kasper – whose beloved grandmother dies. When Death arrives, he helps them to understand that although loss is sad, it is also a natural part of life.
Here, author Glenn Ringtved explains why he wrote the book and how it can be helpful for parents and children.
How have your own views on death, dying and grief been shaped?
I don’t have any special qualifications to talk about death. I am just a person who wrote a children’s book, based on some emotions I experienced when I lost my mother. As a young person, I guess you don’t spend much time thinking about death. And you shouldn’t. I believe we are supposed to live our lives in the best possible way, and we are not supposed to know much about death. It’s one of the mysteries of life. We need those. It’s just there, it’s inevitable.
I did have a period, around my 30th year, where many people around me died, including my mother. You start thinking about it when it is present. But then you have to let go again and live your life.
What inspired you to write a children’s book about death?
I wrote this book when my mother was very sick from cancer. She was 54 when she died. I went to the hospital with her the day they told her that they could do nothing more for her. Afterwards, we went home and talked about it. Of course, we were both very sad, but she said this: “Cry, heart, but never break”. It was her way of comforting me and explaining that it was okay to be sad, but that I had to remember life goes on. When I came home that night, I was laying in bed thinking about how to explain this to my own kids. I wrote the story the same night – not to make a book, but just to have some way to start talking to my kids about death. Later, it became a book.
In Cry, Heart, But Never Break, the children experience grief through their elderly grandmother dying, a process that is often considered normal and natural when grandparents reach old age.
Can the book be helpful for children experiencing other forms of grief, such as that triggered by the death of a parent or sibling?
Yes, I think this book can be useful when kids experience any kind of loss, even their pets, which can be extremely painful. I remember losing my dog when I was 11 and I just couldn’t get over it. The book could have been about anyone or anything, I just used the grandmother because that was what my kids and myself could relate to in that moment.
Children are intelligent people. They have eyes and ears, and they see and feel what is going on around them. They know that death is there and they will experience it sooner or later, so it is important that we talk about death. If you see a dead bird lying in the garden, talk about it and make a little funeral.
Glenn Ringtved
Why do you think it’s important to talk about death?
Well, as the book says, death is a natural part of life, so the more we are able to talk about it in a natural way, the easier it is to deal with it when we experience it.
How do you hope the book will be utilised by different audiences – children, professionals and others?
It is a book that is written about emotions, it was how I felt it and needed to express myself. I hope that shines through the text. I hope parents will take the book down from the shelf and have a talk with their kids afterwards, and not just use it as a goodnight reading. It’s not that kind of book, and it is not for children to read alone.
Have you heard about any ways it has already been useful for people?
It is 17 years since I wrote the book and it was published in Denmark, so I don’t remember too much about the reaction. But I know that it has been used at church services in the USA, I have seen some on YouTube, although it is not a religious book. I am happy that the book is used all over the world, regardless of what religion people have. I didn’t think in a religious way at all, but I know people are very happy about it and are using it widely.
Alongside books like Cry, Heart, But Never Break, what more can be done to make death less scary for children, as well as for ourselves?
It is important to remember that children are intelligent people. They have eyes and ears, and they see and feel what is going on around them. They know that death is there and they will experience it sooner or later, so it is important that we talk about death. If you see a dead bird lying in the garden, talk about it and make a little funeral. We just need to accept death and not be afraid of addressing it.
Cry, Heart, But Never Breakis written by Glenn Ringtved and translated into English by Robert Moulthrop, with illustrations by Charlotte Pardi.
If you’re interested in books on death and bereavement for children and young adults, you might enjoy these other great titles:
Slog’s Dad and The Savage by Mark Almond
A Sky of Diamonds by Camille Gibs
Falling Out of Time by David Gossman
The Fault in Our Stars by John Green
Ten Sorry Tales by Mick Jackson
The Heart and the Bottle by Oliver Jeffers
The Brothers Lionheart by Astrid Lindgren
We Were Liars by Emily Lockhart
The Scar by Charlotte Moundlic
The Sky is Everywhere by Jandy Nelson
A Monster Calls by Patrick Ness
Mum’s Jumper by Jayde Perkin
Fox & Goldfish by Nils Pieters
My Sister Lives on the Mantelpiece by Annabel Pitcher
Michael Rosen’s Sad Book by Michael Rosen
Badger’s Parting Gifts by Susan Varley
Goodbye Grandma by Melanie Walsh
The Velveteen Rabbit by Margery Williams
The Cat Mummy by Jacqueline Wilson
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
25th April 2019
Why don’t we talk about death?
Death is something that everyone will experience, yet many of us are afraid to talk about it.
Whilst in post, Andrew Thorns, former Director of Medicine at Pilgrims Hospices, explored why this might be and shared what can be gained from having this important conversation.
Death is something we don’t really think about, although I suppose I do as I work with dying people all the time and have done for more than 20 years. But why don’t we think and talk about death? Because we’re fearful of what it will be like? Because we are not sure what happens after? Because it challenges our beliefs, or it causes pain to those we love?
All are very relevant concerns and there are many others, but perhaps there is something deeper. Perhaps there is something as part of our evolution as a species, something within our make-up, that means as soon as any connection to death comes our way our behaviour and attitudes change. So instead of thinking ahead, planning, deciding what is important to us and making rational decisions about our healthcare, we put it all on the back burner.
We need to trust that talking and thinking about death doesn’t make death happen. When we’ve overcome this, the biggest fear, what more is there to worry about? Once we have planned for the worst, we can continue to hope for and achieve the best.
Dr Andrew Thorns
Sheldon Soloman and death anxiety
These thoughts had often gone through my mind, and were reinforced when reading the work of Sheldon Solomon, a US social psychologist. He gave an excellent talk at the Hospice UK conference in 2015. Briefly, his theory goes: According to Darwin’s Theory of Evolution, in order to evolve as a species we needed to strive to stay alive. However, at some point in this evolution we became aware that we are going to die and there is nothing we can do to avoid this. For our early predecessors, this would have caused terror and fear, and they were left trying to manage these feelings.
They did this, and we continue to do so, in various ways:
We believe that some piece of ourself can live on after death. This manifests either as part of a religious faith, where one believes they will gain immortality in an afterlife, or by leaving behind a legacy, for example through their children or by recording their life story before they die.
We look for ways to achieve a life that has meaning and value.
We keep thoughts of death far from the front of our minds. Distracting ourselves with other day to day activites: ‘tranquilising with trivia’, as Solomon puts it.
Solomon and his colleagues confirmed this in a series of experiments. When interviewing people in front of cemeteries, funeral homes and other locations that evoke reminders of death, their behaviour and attitudes changed – even when the triggers were subliminal, with the person unaware of them. These behavioural changes were wide-ranging, including:
Sticking with likeminded individuals and distancing themselves from others
Support for war and suicide bombers
Change in voting preferences towards previously unpopular politicians
Distancing themselves from animals and nature
Overall, subjects in the experiment tended to prefer things that were familiar to them, and they distanced themselves from the thought of being close to animals.
How can these insights help us? We should consider it from three perspectives: individuals, society and the hospice movement.
How can we start to talk about death?
As individuals, we need to recognise that if we can get over this reflex fear of all things associated with death, then we can live better lives – we need to trust that talking and thinking about death doesn’t make death happen. When we’ve overcome this, the biggest fear, what more is there to worry about? Once we have planned for the worst, we can continue to hope for and achieve the best.
After all, it’s not just about a good death, but also living well until you die.
Dr Andrew Thorns
If this approach to the taboo of death became embedded in society, we would all benefit from the open conversations that would result. Decisions about healthcare and treatment would be more in line with individual peoples’ wishes This would remove pressure from their families who, in turn, would be better supported. Resources could be utilised more effectively and directed at what was most important to the individual. The fear associated with the word ‘hospice’ would disappear, and patients needing hospice support would be referred earlier, enabling them to experience greater benefit.
The importance of hospice care
So, what do hospices do? Despite many people thinking that they are places where people spend the last few days of their lives they actually do much more than this. You may have heard that hospices can also improve comfort, ease symptoms and support families through difficult times. This they certainly do, but their most important and impressive achievement is enabling people to get over the fear of death and carry on living well. How do hospices do this? By helping to build a container of care around that person and their family. Why is this needed? When faced with the horrible, dark fear of death, the frightened soul or spirit tries, quite reasonably, to keep away from it.
Rather than this fearful soul left to confront this daunting prospect alone, a container of care is needed that fits carefully to that person’s needs and enables a smoother journey and adjustment to what is ahead. A hospice can build this around the person and those close to them, so that they can face up to the initial fear and keep on living well despite this knowledge.
After all, it’s not just about a good death, but also living well until you die.
Andrew Thorns
Andrew Thorns is Director of Medicine at Pilgrims Hospices, the largest hospice charity in east Kent, UK. He strongly believes in the importance of research and skilled communication to improve patient care.
The views reflected here are his own.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
