Our first 2 events went very well, with nearly 60 people at the excellent Webinar with Lynn Bassett , and over 20 at the first Discussion session, which gave rise to rich sharing in our break out groups.
This series is aimed at providing opportunities to talk openly about the subject of death and dying, rather than avoiding it as a taboo topic. We feel this is even more important in the wake of the devastating effects of the Covid-19 global pandemic during recent months.
All are welcome at these online events; you may find them particularly helpful if you are supporting, visiting or caring for older people, the bereaved, or those nearing the end of life.
Format for the Events
We will kick off the series with a seminar type event with Dr Lynn Bassett being interviewed by Carol Burns, followed by opportunity to post questions in the chat function. This event can host a greater number of attendees.
The following 3 events will give more opportunity for discussion, and so may need to be limited to 30 people per event; if the events are oversubscribed we will keep a waiting list and consider planning further dates.
You can pick and choose which events to attend, there is no obligation to attend all 4 events as they are each stand-alone events in their own right.
Peter Hallgarten, who survived a serious case of coronavirus. He and his wife decided 10 years ago to put together their end-of-life wishes (living wills), including a DNR (do not resuscitate order).
The article sates: ‘…Suddenly, death is all around … Everyone knows someone who has been touched. As a result, people are not only having intimations of their own mortality; more of them are thinking about how they want to die; of what they want to avoid in the way of intervention and what they would hope for, too, given the choice. Interest in advance directives, the documents often referred to as living wills, has grown dramatically during the pandemic….’
A new support and advice service is being launched to help people across West Yorkshire and Harrogate through grief and loss.
‘Practical and emotional support and advice is available from 8am to 8pm, 7 days a week via our freephone number 0808 1963833, or online chat facility. Our team can offer support and help connect you with organisations local to you, who can offer additional help where needed’.
The free service, commissioned by West Yorkshire and Harrogate Health and Care Partnership, will be delivered by West Yorkshire and Harrogate Independent Hospices Consortium, Bradford Counselling Collaborative and Leeds Mind.
Do contact the service if you:
are suffering any form of grief and loss
are worried about losing someone, whether this relates to a family member, friend or member of their community
have been unable to see a loved one in their illness or final days
are feeling impacted by the volume of deaths across the country or other aspects of the virus
As we are not able to run the conference at this time, we thought we would remind you of some useful websites and books on the topics of living and dying well. We hope you benefit greatly from exploring this content.
This excellent website based on an ancient Catholic tradition called Ars Moriendi offers practical and spiritual support to anyone faced with the prospect of death and dying, including helpful articles and videos.
Revd. Tom Lusty, LCI member and Vicar at St Giles, Bramhope reflects on ministry spent as a full-time hospice chaplain in the context of Covid-19.
Given the five years I spent inhabiting a hospice on a more or less daily basis I now know that death isn’t all that bad. It can sometimes be protracted and exhausting for all concerned. But even in such circumstances a good death is possible. With a good death there is a tangible sense of completeness, of dying with integrity.
To be honest I did not spend a great deal of time talking about death at the hospice beyond using euphemisms for it. For some of the nurses heaven was their euphemism of choice for death: “Gladys has gone to heaven now – God help them all up there”. I did speak, however, about my Christian faith when invited to do so, and the opportunities that came my way to speak about resurrection hope were considerable.
Within our tiny specialist world hospice chaplains have developed a repertoire of material that enables people to prepare spiritually for their own dying. Three resources that were and remain helpful to me are Mud and Stars, which gave me the theology, Tom Gordon’s A Need for Living which gave me the metaphors, and John O’Donohue’s Benedictus which gave me everything else: when there is nothing else you can do, you can always bless. That is a powerful thing to be left with – if you can bless sublimely, even better.
Dying is not about so much anguish and forsakenness. A good death is a movement towards integration – from “dislocation to relocation, from disorientation to re-orientation, from disintegration to re-integration” as Mud and Stars puts it. Part of a wider crucifixion/resurrection dynamic where we are always on the lookout for resurrection.
The cover photo of a book by Tom Gordon entitled New Journeys Now Begin depicts the access path to north beach on the Island of Iona. The inscription reads “No bikes beyond this point”. For each of us there will come a point where we have to relinquish the bike to go on the next stage of the journey. Getting off the bike can be painful because we get used to cycling everywhere. The more in life we can put the bike down and enjoy the view, the better prepared we will be for that moment in life when we will each have to “say goodbye to the bike”. As it were. This is a metaphor. A metaphor for resurrection.
As well as using metaphors a lot a group of hospice chaplains adopted a mnemonic as a helpful way into conversations about dying. The HEALER model goes like this:
H is for Hope – what takes people in a trajectory away from despair.
E is for Exploring Feelings – encouraging people to articulate their feelings.
A is for Adjustment to Loss – exploring how significant loss is transcended.
L is Looking Back – doing a life review: anything significant left unresolved?
The E and the R stand for Existential and Religious issues – some people are terrified of death for reasons that go beyond fear of the physical process of dying. I put that under ‘Existential’. Religion comes last of all. That is healthy because it says not all our needs are religious ones. We may choose to express our grounds for hope in religious terms but never exclusively so.
The HEALER mnemonic provides us with six different prompts as a helpful way into a conversation about dying. These prompts are not to be tackled exhaustively in chronological order (imagine how awful that would be) but rather as a means of focussing on some of the ways in which the conversation might go.
Given that Easter this year coincides with the beginning of the six to eight week peak of the Covid-19 pandemic in the UK using prompts from this mnemonic might be helpful during that time if we wanted to reflect on our own mortality. Devoting a little space to reflect on our own dying (say ten minutes, once a week) will certainly make us more open to engage with others who may be starting out on the process of the end of life’s journey.
When someone asks “what hymns are you having for your funeral?” a closed response “goodness, I have never thought of that” may not always be adequate. A more open-ended, personal response to the question might well allow the questioner to fulfil a need to talk openly about death.
In any Christian model of spiritual preparation for dying you can’t leave out the letting go …and the leaping. John O’Donohue describesthe daily handing over of one’s life as the act of awakening and surrender. The possibility of this daily practising of such a hand over, however we may choose to do it, of our lives into the life of God may well be what makes us most Christ-like.
Each morning we awaken to the light… each night we surrender to the dark… Awakening and surrender: they frame each day and each life; between them the journey where anything can happen.
John O’Donoghue, Anam Cara
The HEAL(ER) mnemonic was devised by Revd Linda Elliott, at one time Chaplain at Thorpe Hall Hospice in Peterborough.
Books mentioned in this article:
Mud and Stars: The Report of a Working Party on the Impact of Hospice Experience on the Church’s Ministry of Healing
It’s been said that death is the last taboo and certainly in our heavily medicalised approach to dying we seem to have lost some of our skills for dealing with the end if life.
How many people have seen a dead body, how many people have been with someone who is in the last few days of life?
It may be that it’s only when someone very close to us approaches death that we have those experiences, often for the very first time.
I would hope that when I am in the last few months of life I have the support of a palliative doctor (or “deathwife”),such as Kathryn Mannix. She spent her days with the terminally ill and their families, witnessing and supporting them at times of intense suffering, terror and loss. About a quarter of deaths are sudden and unexpected, but she saw the ones that come slowly, over months or years, and while much of her work was diagnostic and medical, one of her crucial tasks was to help those who are dying and their families find ways of dealing with life’s final, great event.
Mannix has recently retired and her book from 2018, With the End in Mind: Dying, Death and Wisdom in an Age of Denial is a treasure trove of stories about the end of life for a great variety of people, men and woman young and old. Mannix tells their stories with compassion and love. She talks about the different strategies she uses to help people make the right choices for them in their as they approach death and in doing so points us in the direction of the decisions we may need to make.
She never judges and is clear that people make many different choices, but she wants people to have the support to make choices so that there death be as good as they wish it to be.
The book is compulsive, I couldn’t put it down, I cried and I laughed with the people she worked with. I recommend it to anyone of any age and by recommending it to other family members it’s a good way to start those very difficult discussions about your last wishes.
As we age, or as our health deteriorates, we can make plans for what treatments we would wish to avoid or where we would like to be cared for. In a recent edition of The Tablet (26th May 2018), a palliative medicine pioneer explains that it’s often a surprise to patients and families that a frank discussion of dying can feel so helpful.
When I was working for MHA, a key part of the work of the Chaplaincy team in MHA Care Homes and Independent Living communities was the development of “The Final Lap” – a programme to train staff to support residents and their families as they explore what the last days of life will mean for them. My initial reaction at the time was shock, and the thought came to me “who wants to think about this?”. I came to realise this is my own fear talking, my own denial about a process that is as natural as birth. What I came to understand is that it it possible to respond to planning our dying in a positive and creative way. “The Final Lap” philosophy is based on 3 key principles:
Create a culture that faces the reality of death openly, as part of human life, and to deliver support that makes it a more positive experience for everyone.
Different people have different ideas about what makes a ‘good death’, so preparation and planning based around the individual’s wishes are important.
Supporting someone who is dying can be difficult, but it can also be very rewarding. Final Lap training will help staff identify and address their support needs more effectively.
The Tablet article tells the true story of Ignatio, a man who is coming to the end of his life and finds relief and freedom in being able to talk about what he would like and, importantly, not like as part of his Advance Care Planning. The full article is behind a paywall here , and details about the author, Kathryn Mannix, and her latest book can be read here .
Our parishes have an important role in helping us ‘pack for the journey’. The Church offers hope and comfort because it is rooted in the belief that God made us to enjoy eternal life with Him. We are blessed with some special prayers and sacraments that give meaning to sickness and death.
Growing Old Grace-fully are thinking about offering a short session to parish groups on planning your Catholic funeral. This session will also offer the opportunity for people to start to explore some of the deeper questions and considerations for a parish in helping people think about their own end of life wishes. Is this something you think your parish might be interested in? Please get in touch with Rachel at email@example.com or call 07702 255142 for a chat.
Our trustee, Ann West, was really enthusiastic about a Day Conference she attended on Compassionate Communities: Diversity in Dying at Bradford University on 16th May, as part of Death & Dying Week. The speakers were Alan Kellehear, Professor of End of Life Care at Bradford University and Mary Clear, End of Life Doula – an activist from Todmorden.
Ann writes, “Having attended this Conference with an open mind, I was riveted by the first two speakers, open mouthed in amazement.”
“Allan Kellehear is an internationally renowned speaker on the subject of end of life care, and intends to revolutionise this by creating Compassionate Communities. He will do this by getting cities to sign up to become Compassionate Cities – Bradford is one such city, Seville is another. His plan is to target the institutions such as the Local Authority, Health and Wellbeing Boards, Libraries, Schools, Primary Care, Health Promotion agencies, Hospices and more. His view is to create the changes from top down, changing the currently haphazard way in which end of life care is managed.”
“Allan’s main points were:
The Health Service is done – has no further capacity, cannot cope with the ever increasing number of patients, particularly the elderly.
Most older people want to die at home, and yet most die in hospital.
At the end of life , and following bereavement, only 5% of the care given is professional; the rest is informal caring by family or friends
It takes time to die, dying is getting longer and longer, and bereavement lasts forever.”
“Allan also went on to say that health is everyone’s responsibility. Currently people and services wait for a terminal illness, and then do something ( which is a 1940’s model). Palliative care is partial and episodic. It is important that we learn about death and dying, bereavement and loss and that we care for each others lives – bereavement and loss is a community responsibility. We need to promote a good death instead of symptom management. His blueprint for compassionate cities includes:
Publicity in public places e.g. art galleries, museums
Raise awareness / education
Employers to have a realistic bereavement policy
A peacetime annual memorial parade
Churches to have a dedicated group for end of life care
Volunteer programmes in hospices acknowledge people’s wealth of skills / compassion
In Public Health there needs to be behavior change / environmental change, as well as a shared responsibility for healthy living and support around dying, caring and bereavement support.”
“The next speaker was Mary Clear, an activist in Todmorden who is a Doula, a person who accompanies a dying person, and their family, during their final illness and carries out their wishes in relation to their funeral.”
“Mary spoke about a week of activities around death and dying called ‘Pushing Up The Daisies’ in Todmorden. Mary commented that it had been a huge success.”
Ann says “I had never heard of a Doula, but in pre war times, like the woman who used to live on every street who delivered babies, there would be a person who did the laying out of a body and generally cared for the family. The Doula is a modern day equivalent. A person who gives compassionate care to an individual, helps to give permission to talk about death and how the dying person would like their funeral to be. Mary even arranges a funeral herself, according to the wishes of the person, helping to offer some autonomy in a situation where there is very little. It would be impossible to reproduce Mary’s talk , which was very personal, which challenged the current way of death and showed that, in a small way, a bottom up approach can be effective.”
Ann concludes “If you compare the recent changes in attitude to Dementia brought about through collaboration of large institutions, including the Banks, transport services, the Police, schools, churches, social and broadcast media, it gives hope that this initiative could develop in a similar way. With people like Allan Kellehear and Mary Clear leading initiatives, it could happen very soon.”
Thanks very much to Ann for such a thorough report. I am sure this will help our work in supporting Parishes and individuals to lift some of the taboos around talking about Death & Dying.