Care that begins at the end

We have dozens of names for the word ‘dying,’ but when it happens, we rarely know what to say. A new joint project between the SVP and the Centre for the Art of Dying Well at St Mary’s University, Twickenham, aims to provide comfort to the dying and support for family and friends left behind.

We live in dark times with death and bereavement an uncomfortable truth for many of us, but how we support those whose life is ending and the grief which inevitably follows, can be a life-affirming process. After all, death is just another part of life’s journey. The End of Life Companionship project is a two-year programme which perfectly matches the need for informed support for people at the end of life with the SVP’s mission to seek out and help anyone in need. Within its duration, End of Life Companionship aims to offer support, mentoring and training to around 500 members and volunteers.

Leading the project for the SVP, Director of Membership Jon Cornwall says: “We try not to place limits on how we befriend people and we are prepared to journey with them all the way through their lives, which means that we sometimes find ourselves the last reliable friends in someone’s life. It is a tragedy to discover that people so regularly die alone when that would not be their wish. The End of Life Companionship project will go some way to ensuring that we reduce the number of people who die alone.”

The project was first suggested following the SVP National Meeting in 2019, with funding secured in summer 2020. For the Centre for the Art of Dying Well, the project is being led by Maggie Doherty, who adds: “The project is totally aligned with the SVP’s mission in terms of befriending and reaching out to people in poverty. We are all in poverty in various ways, be that material poverty, spiritual poverty, or isolation at the end of life.

Just as we work to alleviate and remove the stigma from these other poverties, so too we seek to be there to respond when they first receive a terminal diagnosis, and in cases of deathbed isolation.” A holistic approach The End of Life Companionship initiative will offer a range of invaluable resources for people who feel they want to offer support and companionship during the most complex, emotional and poignant part of an individual’s life. Webinars, factsheets, and a three-part training programme are being created as part of the project’s bank of knowledge, and ongoing support, mentoring and sharing the experiences of members and volunteers will enable a holistic approach.

Jon adds: “Covid has supercharged many of the things we have been doing, and sadly, the conversation about being with people towards the end of their lives has become more pressing than ever. As we respond to need, we are tasked to ‘seek and find those in need’ when that means reaching out to care-homes, NHS trusts and others. If you are an existing Conference or a member and you find yourself in a situation where a beneficiary is dying, then this will be of significant importance."

“However, probably the most beneficial part of this project is that we are inviting groups of people to participate in a conversation on a subject which is seen as taboo. Being open about death allows us to better care for people at the end of life in a dignified and compassionate way.”

Maggie agrees: “Over the past year many people have become more comfortable with the ‘D-word’ (death) or the ‘G-word’ (grief), and many will feel that tug on their heart to provide assistance in any way they can to help someone prepare for the end of life, and in so doing, help to relieve some of their anxiety, fear and anger, and find acceptance.” Maggie adds: “Archbishop Vincenzo Paglia, President for the Pontifical Academy for Life, reflecting on the Covid-19 pandemic and recent world events, said that ‘if it were up to him, he would correct the last corporal work of mercy from ‘bury the dead’ to ‘be close to the dying.’ It’s a work of mercy which should be valued and stressed today. It means showing hope and knowing how to show it in a language that humankind understands today. This is the challenge.’ ”

On 16 February, Alejandra Dubeibe joined the SVP Membership team to support this project. She will provide a bridge between the SVP and the Centre for the Art of Dying Well, and will work with experts in the field, including palliative care specialist Dr Lynn Bassett, who also volunteers for the SVP, to provide specialist advice and a vital opportunity for reflection with participating peers, both during and after bereavement. Let’s talk about dying Dying and the act of death can spark questions about the purpose of life, spirituality, and even practical considerations, such as what happens to the things you have accumulated throughout your life, be that material or monetary.

However, the project welcomes these difficult questions. End of Life Companionship will inform the discussion, though every death and subsequent grieving process is as different as the people involved. The important message is that the conversation can be started, and at the same time the process of demystifying death and the taboos surrounding it can begin. Jon continues: “Though the project is nominally two years, its impact will reach far beyond this timeframe. A courageous part of our Vincentian life is the characteristic willingness to reflect on our own needs, fragilities and struggles. It is often said by members that they do not give because they can, but rather because they understand how it feels to have experienced that need. This brave journey will challenge our participants to consider their own bereavements. While we are talking of dying and bereavement, we will be able to share the small things which have made the greatest difference for each of us. This is our moment to join the conversation around death and grief, and to recognise the toll it takes on those who care.” The project can also be seen as a stepping stone to further study of the subject.

Maggie explains: “For volunteers and members, it may be something you are facing within your own family or friendship circle. It might be something a parish priest has asked you to get involved with, or it may be something you offer to them, or for some it might be something you participate in with a view to further formal hospital training. For others, they might have a connection with a local care home and this might add another dimension to the care they can offer.”

Jon concludes: “The End of Life Companionship journey should be seen as bringing death to life. It should be life-affirming. Death is not the end, it’s the beginning of something new. To be part of that journey is a privilege.”

Maggie adds: “Confronting death with acceptance through knowledge allows us to live fuller, richer, more empowered lives. The End of Life Companionship project is just the beginning of a conversation, but as more people join in, the subject of dying, death and bereavement will be shared, explored and opened, allowing us to celebrate an individual’s life rather than remember their death."

For more information visit The Centre for the Art of Dying Well’s website www.artofdyingwell.org. Alternatively, please email membership@svp.org.uk or aodw@svp.org.uk.