Bereavement Newsletter
Welcome to this special bereavement-focused edition of the Good Life, Good Death, Good Grief newsletter, produced in partnership with Faith in Older People.
Together, we wanted to explore recent developments relating to bereavement support in Scotland, with a particular focus on some of the support that communities, including faith communities, can provide.
We're delighted to be able to share several insightful blogs from those working in this area, as well as some informative updates about recent developments, and some of the resources and training available. We hope you find it useful.
Every Story's Ending
Every Story's Ending is a report by the Scottish Partnership for Palliative Care. It explores what can be done in Scotland to improve people’s experiences of serious illness, dying and bereavement.
The report sets out an ambition for what living with serious illness, dying and bereavement in Scotland could and should look like, and explores what matters to people when they are seriously ill, dying or bereaved.
Published in 2021, Every Story’s Ending explains why these issues are so important to so many people, and why change is needed. It takes stock of recent progress, work underway and the current situation regarding living with serious illness, dying and bereavement.
Crucially, the report identifies key challenges and explores how to make change happen over the next 3-10 years. It identifies priorities and recommends actions that will make a positive difference to experiences of living with serious illness, dying and bereavement in Scotland.
Find out more about Every Story’s Ending here: https://www.palliativecarescotland.org.uk/content/everystorysending/
Watch this 6-minute film to find out more about Every Story's Ending:
Death, dying and bereavement – some of the challenges for clergy
Rev Canon Dr Marion Chatterley, St Mary’s Scottish Episcopal Cathedral, Edinburgh
There is perhaps an assumption that members of the clergy are so familiar with matters of death, dying and bereavement that the challenges they bring are absorbed into the day-to-day rhythms of pastoral ministry. Of course, to some extent, that is true. But, in common with all areas of pastoral ministry, there is a wide range of experience, expectations and response. Conducting the funeral of an elderly person who had a gentle connection with the church is a very different proposition from taking the funeral of someone who had been a very regular and well-known figure within that same church. Sudden death brings different needs from anticipated death. Once someone becomes too ill to attend services regularly, even a slow and well-managed journey to death can leave those within the church who weren’t party to that journey feeling shocked and surprised. As a clergy person, one of your tasks is to deal with the fallout.
Let’s consider a couple of scenarios:
Peter is a 33-year-old man who is a member of a small church with a strong emphasis on community. He has been diagnosed with a treatable form of cancer. Unfortunately, he doesn’t respond well to the treatment and within months the prognosis is very poor. The challenges for his clergy and pastoral support team include: dealing with their own shock and distress; processing for themselves the idea that someone who is so young is dying; finding ways to support the rest of the community through that dying process; managing the desire of members of the community to see/say goodbye to Peter whilst, at the same time, recognising that Peter has limited energy which he needs to conserve for those closest to him. After Peter has died, there is an ongoing need for community support and care. In ordinary circumstance, this is a community where peer support is a cornerstone. In this situation, people are finding it very difficult to support others because they are so impacted themselves.
Sharon is a woman in her 70s. She has been a lifelong member of her large congregation. She is someone who is known to most regular attenders at the church – she makes a point of speaking to visitors and does a number of volunteer tasks. Sharon’s cancer diagnosis comes as a shock to her and to those who know her. She doesn’t ever manage to return to church. She is regularly prayed for, and a small number of people receive updates from her family, but when her death is announced it comes as a surprise to a great number of people. She has a large funeral which honours who she was in life. People speak for many months afterwards of the Sharon-shaped gap within the congregation.
Each of these scenarios presents particular challenges to the clergy person(s) tasked with pastoral care of those communities. In both situations, the clergy person is dealing with their own emotional response to the situation. But they will probably be helped to manage their own processing by virtue of the need to plan and lead a funeral service.
Funeral planning is often a good way into teasing out and processing some of the emotions that emerge. Funeral planning (ideally with the person before they have died) allows us to share important memories; to honour the areas of life that were most important for that person; to ensure that the funeral feels like a personalised service, focussing on that individual and the people closest to them. Funeral planning allows for tears and laughter; for an acknowledgement of what might not be said; for reflecting on life and faith and for sharing time prayerfully.
The best funerals incorporate time to grieve and time to give thanks. If they are Christian funerals, then they give space for a message of hope and a belief in eternal life. The best funerals allow the clergy person concerned to journey through their own grief process and to feel that they have some kind of closure on their engagement with that person.
It can be more difficult to find a way into conversations about mortality. People think that they want to have the conversation and then find numerous ways to avoid it. I have done training days for Faith in Older People based on the Death Café format.
Here are the questions I have used:
Appetiser:
What do I want people to remember about me?
What do I want people to forget about me?
What is my legacy?
Main course:
Where do I want to die?
What are my fears?
What are my hopes?
Dessert:
How do I stick with the difficult conversations?
How do I help others back to the tricky topics?
What do I do when I feel uncomfortable?
It is often by working through these questions/issues for ourselves that
we become more confident in working through them with other people. My
experience suggests that when we are confident to have the
conversations that are necessary, we are able to create a safe enough space for
that to happen. When people become chronically ill, they spend a lot of time as
a patient. Medical professionals ask them questions on a regular basis. Those
same medical professionals are the people who are in a position to prescribe
treatments that may make a significant difference. They may also control access
to other forms of support and care. As clergy/pastoral carers, we only have
ourselves to offer. One thing we can bring is honesty. Our task is not
necessarily to make people feel better, but it may be to initiate a
conversation that leads to them feeling better. For instance, someone may be
feeling very angry about their situation. There are probably few people they
can have that conversation with. They may be trying to protect their loved ones
from their feelings. We can offer safe space to say whatever is necessary; to
explore whatever is of concern; to offer unconditional listening and response.
We can find ways to use the language of reality – finding ways to talk about
the changes that are occurring; speaking about the journey that the person is
making; not being afraid to talk about death.
Framing the conversation within a language that speaks of chapters of life may
be a helpful tool. That allows us to talk about what might be possible within
this particular chapter, whilst acknowledging that some other options are no
longer possible. It’s a way of grounding conversations in the here-and-now, of
bringing a gentle reality check that can sometimes be liberating.
Clergy who have done some personal processing are best placed to offer support
to others as they do their own processing. The end result can be days lived
well and a journey towards a good death.
Good Life, Good Death, Good Grief
Good Life, Good Death, Good Grief is an alliance of people and organisations that are interested in improving people’s experiences of death, dying and bereavement in Scotland.
We are particularly focused on enabling communities and individuals to support each other through the difficult times that can come with death, dying and bereavement.
We believe that people usually want to do the right thing when someone they know is affected by ill health, death or grief.
But sometimes other things get in the way – lack of knowledge, time, experience or confidence can mean people don’t offer help. Structures, culture and conventions can create barriers to individuals acting on their intuition.
Good Life, Good Death, Good Grief wants to address this. We want to create a Scotland where everyone knows how to help when someone is dying or grieving.
We also believe it is important to be prepared for illness and death – there are some practical steps that everyone can take to increase their chances of receiving the support they’d hope for towards the end of life.
What does Good Life, Good Death, Good Grief do?
We run annual participative events such as Demystifying Death Week and the To Absent Friends festival, creating opportunities for people to take local action to increase knowledge, skills and confidence.
We proactively encourage local and national media engagement and dialogue.
We identify and share good practice, learning from and engaging with practitioners within Scotland and internationally.
We provide networking opportunities for our members.
We publish a monthly newsletter for our members, sharing the latest developments, events and news in Scotland and beyond.
We provide information resources and practical tools for our members, making them freely available on our website.
We run small grants schemes to support local activities by our members.
We work to influence public policy.
We run a website that provides and signposts to resources for people who are dealing with death, dying and bereavement in a personal capacity.
More information
If you’d like to join Good Life, Good Death, Good Grief or find out more, sign up for our monthly newsletter here https://www.goodlifedeathgrief.org.uk/members-sign-up/ or check out our website: www.goodlifedeathgrief.org.uk
Demystifying Death Week
Demystifying Death Week is about shining a light on death, dying and bereavement in Scotland.
People usually want to do the right thing when someone they know is caring, dying or grieving. But often they can feel awkward offering help, or worry about making things worse.
People can have questions about serious illness or death. But often they don't know who to ask.
Making plans when you’re healthy means there is less to think about when you’re ill. But often people put off making plans until it is too late. Demystifying Death Week is about giving people knowledge, skills and opportunities to plan and support each other through death, dying, loss and care.
Get involved
Each year, organisations and individuals across Scotland organise events to mark Demystifying Death Week. All kinds of events take place, from death cafes to film nights, exhibitions to craft workshops, seminars to lunches.
Would you like to be involved with this year's Demystifying Death Week? More information is available here: https://www.goodlifedeathgrief.org.uk/content/demystifying_death_week_2023/
The EASE course, its benefits, reactions and the potential
Caroline Gibb, Community Development Lead, Scottish Partnership for Palliative Care
What is End of Life Aid Skills for
Everyone?
End of Life Aid Skills for Everyone
(EASE) is a course designed to enable
people to be more comfortable and confident supporting family and community
members with issues they face during dying, death and bereavement. The course has been developed by the Scottish Partnership for Palliative Care
(SPPC) and is based on the belief that although we may not realise it, or feel
like it, we all have an innate ability to support and care for each other through
difficult times.
EASE is delivered free of charge by volunteer EASE Facilitators. It is designed for members of the public in Scotland, and welcomes adults of all ages, experiences and walks of life. Each person who participates in the course brings with them their own unique life experiences, and as well as learning from course materials, participants will learn from each other.
EASE participants work through four modules over four weeks designed to build confidence and comfort around issues relating to death, dying, loss and care. A key element of the course is the focus on peer learning and discussion, which helps build a sense of community.
What are the aims of the EASE course?
The course teaches the basics of end-of-life care and addresses some of the fears and uncertainties frequently held by members of the general public. It aims to help people to:
- Become better equipped to provide informal support to friends, family and community members dealing with death, dying and bereavement.
- Find it easier to deal with these issues when they have to face them themselves.
- Know where to find further information and support in relation to these issues.
Some of the questions the course can help to answer include:
- How can I navigate the health and social care system in Scotland?
- What issues might crop up when someone is approaching the end of life?
- What medicines and treatments can help when someone is dying?
- How can I plan ahead for ill health and dying?
- What emotional issues might affect someone who is dying?
- What support can a friend or family member offer to someone who is caring, dying or grieving?
- How do I offer help without interfering?
- How can you look after yourself when you're looking after someone else?
EASE Online
EASE was intended to be a face-to-face course and was first piloted in 2019. When face-to-face delivery became impossible during the Covid lockdowns, SPPC developed an online version. EASE Online is delivered via the online learning platform Moodle, with the discussion element facilitated via Zoom. Participants work through the modules – which have reading, films, activities and discussion forums – in their own time through the week, then the group gets together via Zoom to share reflections.
The online course has been very positively received. One participant said of their experience: “I thoroughly enjoyed the EASE course, meeting people from different areas, backgrounds and experiences. A lovely learning environment that created a safe place for people to share and contribute.” While another participant said they found the course “very helpful on both an emotional and practical level.”
EASE In-person
As it’s now possible to facilitate in-person gatherings, SPPC are working hard to get the face-to-face version of EASE off the ground again.
This version of the course consists of four weekly two-hour sessions, delivered by two volunteer EASE facilitators, in a venue local to the course participants. Participants work through activities and watch films together and are invited to share their reflections and stories through small group discussion. And course there is always plenty of tea and biscuits on hand.
When asked what they would take away from the face-to-face course, one participant said ”a new strength in being able to help, plan and offer support,” while another said they’d found “a sense of…being a community to deal with aspects in end of life care”.
Another participant of the face-to-face course said “EASE provides a fantastic breadth of information, opportunities for reflection and opportunities for connection with others.”
Who are EASE facilitators?
Each EASE course is supported by two volunteer EASE Facilitators who work together to create a welcoming environment, facilitate group discussion, move the course along, and ensure the course content is covered.
No special experience is needed; anyone who’s completed the EASE course can go on to do a short facilitator course. People from all backgrounds and experiences are welcomed and encouraged to become EASE facilitators and are then supported to go on to organise and run courses for their own communities and networks.
What’s next?
EASE Online has demonstrated how a digital approach can increase access for many, and SPPC will be continuing to support facilitators to offer the online course. The updated version of the face-to-face course will be rolled out in early 2023, and volunteer facilitators will be trained and supported to deliver EASE in the way that suits them and their communities best. The hope is for EASE to reach as many people in Scotland as possible and help build their confidence and comfort supporting friends, family and community members during the difficult times that come with dying, death and bereavement.
You can find out more information about EASE here: https://www.goodlifedeathgrief.org.uk/plan-illness-ease/ or email caroline@palliativecarescotland.org.uk.