Rebalancing our relationship with death, dying and loss: Elly’s story

Heather Richardson, CEO and Marie Cooper, Project Lead for Celebrating Palliative Care Nursing share their experience of meeting Elly Bonham Carter who is living with advancing lung cancer and coming to the end of her life. Elly candidly shares with them her experiences of death, dying and loss. As well as facing her own mortality, she cared for her disabled husband for over 26 years until he died, and has witnessed death in her family.

On 21 June 2022, St Christopher’s CARE is hosting the Future of Dying: Creating a Network for Change half-day virtual conference. It aims explore, just like Elly, how we can look to rebalance our relationship with death, dying and loss.

“Grateful for what life there is… this moment is a gift.”
Elly

A recent Lancet report that allocates value on death in order that citizens can live well could be seen as senseless in today’s world, which often appears to deny the existence of death until it can be ignored no longer. The report offers guidance for individuals, for civil society, for health and social care systems, for policy makers, researchers and other stakeholders. It focuses on a new utopia in which aspects of life and death are more balanced at micro and macro levels. This utopia is described as realistic – a state, according to John Rawls (1993) in which citizens can realise their fundamental interests through a new set of conditions, combined with justice and reasonability.

Even if we were to believe that the timing is right for the new conditions proposed by the Lancet Commission, some may question whether individuals want to live in the utopia its writers describe. It is one in which conversations about death, dying and loss are commonplace, where communities work alongside professionals to create stronger networks of support and where the spotlight on death extends beyond unavoidable physiological deterioration to an experience that is also spiritual and relational in nature.

A colleague Marie and I recently had the privilege to meet Elly – a wise and thoughtful woman who welcomed the opportunity to talk to us both about her thoughts of death within the context of her life. Aged in her eighties, Elly is living with advancing lung cancer and acknowledges that she is coming to the end of her life. The lens through which she views the world is rich, multi-faceted and uncompromising at times. She is a psychotherapist (still in practice); she was a long-term carer of her husband in their mid-life and bereaved of him nearly 20 years ago. Elly lives in her own home in North London with support from a large family, carers, and friends. She was interested to learn about the Lancet Commission and her insights go some way to helping me understand whether the utopia proposed has resonance with Elly and people like her.

She does not fight her illness but tries instead to integrate it into her life

I was struck throughout my meeting with Elly about the relative quality of her life. She speaks of feeling peaceful, accepting of her current situation and appears comfortable (despite clear symptoms of her disease). As striking is her apparent love of life and her interest in others, reinforced by a vibrant appearance and demeanour. Compared to many other individuals that I meet in this phase of life she presents a very different picture. So, what is the secret of her apparent ability to die well? It is not simply “luck” according to Elly. Whilst it might be argued that her social determinants of health are relatively positive, it is much more. We explored that together.

At the heart of her wellbeing is an apparent comfort with death. She first experienced it as a young child when a much-loved woman caring for her died unexpectedly in front of her. This woman, committed to Elly’s wellbeing to the end, asked her to go and get her father urgently but also confirmed with Elly that she should not be alarmed. Some years later, her husband, only in his 40s suffered profound and life changing disability due to complications associated with surgery. Elly spoke candidly with the doctors about his prognosis and made a decision to bring him home, apparently to die, although he then lived for a further 26 years with significant disability.

Her confidence to talk about dying, death and bereavement gives her and those close to her an opportunity to say what they want and to enact her wishes

All these years later Elly recalls so clearly the kindness she observed and experienced by those she met as she visited the hospital to attend her husband and it meant so much to her. She recalls Sister Dillon who made her feel so much ‘at home’ on the ward and noted the kindness of nurses in their care for a particular gentleman. This man could only use his finger voluntarily and every day they would enable him sit in his chair and would place a glass of water near enough for him to tip. Every day he would tip it over, Sister Dillon understood that for him this was a means of expressing how he felt and would not take it away from him in spite of the work it demanded of the nursing team. She also recalled how the attendant in the parking lot noticed her daily visits and assured Elly she would not have to pay.

She speaks honestly about the ups and downs of that shift in their relationship, and of the losses as well as the unexpected pleasure of his enduring life. She is open also about the challenges of being a carer over such a sustained period but confirms that she was able to do that because of their shared humour and the honesty with which they attended to the ambivalence they both experienced in relation to his condition and its impact on their family lives. When her mother was dying Elly went to stay with her. Elly’s lasting memory is being held by and also holding her mother as she died. Her mother, similarly, candid about dying, challenged Elly to have as good a death as she had enjoyed!

What is clear also, is that Elly remains engaged and connected in her relationships despite feeling much less well physically. She speaks with her brother and children daily; she receives regular visits from other family members and has translated her engagement with her carers to one of friendship. She remains in touch with patients with whom she has a therapeutic relationship as a psychotherapist and actively participates in new relationships despite the near ending of her life. Her condition can make this difficult as she manages distressing and intermittent diarrhoea and has difficulties eating, but she continues, nonetheless. When she cannot see people in person, she uses the phone; when that is not possible, she is connected through photographs and gifts she has received and gives to others.

She speaks honestly about the ups and downs of that shift in their relationship, and of the losses as well as the unexpected pleasure of his enduring life

It is the wee small hours of the morning, when Elly can’t sleep, that she goes shopping! She is so grateful to have access to Amazon as it enables her to browse looking for ‘completely idiotic’ items which will bring a little joy and fun for those she loves; her latest buy is finger rings that light up. When the doorbell rings with a delivery her wonderful carer asks ‘what on earth have you bought now!’

Elly’s experience of peace and acceptance is something that she seeks to create and re-create on a daily basis. She does not fight her illness but tries instead to integrate it into her life. She tells me that she loves her bed and to sleep and treats herself to new books on a regular basis – they are her escape. Similarly, she allows herself only a few minutes each day to reflect on the challenges that she faces, then she recommits to a more positive frame of mind “grateful for what life there is… this moment is a gift.” Elly says she can focus on the present because she is confident that her life is one that is near complete, albeit with mistakes and areas of weakness, some of which are only recently overcome. She recognises that she is “passing through” this life and that she has achieved most of what she has wanted to do whilst in it. Her relative insignificance in the world is not something about which she struggles; instead, she views her transience more simply, as part of the cycle of life and something that cannot be fought. This more spiritual interpretation of dying she holds brings comfort at many levels including a strong belief that she can still see and feel her husband who died in the early 2000s.

She allows herself only a few minutes each day to reflect on the challenges that she faces

We left Elly’s home both reassured and challenged by all she had told us. If nothing else there is strong resonance with her approach to her life and its end, and the realistic utopia described by the recent Commission. Her confidence to talk about dying, death and bereavement gives her and those close to her an opportunity to say what they want and to enact her wishes. The emphasis on relationships and the existential experience of life and death brings meaning and pleasure. Her networks, rich and varied mean that she can continue to feel valued, connected and stimulated. Practically they enable her to remain at home with her memories, her independence and all that she has built in her life over eight decades.

As we said goodbye Elly dipped into her handbag and gave us both a small Perspex cube which lit up when put into a drink. “Enjoy” she says, “I love making people smile with silly stuff”. “Not silly” one of us reflects, “Quite the reverse. It represents the richness of life – generosity, connections and fun -recognised by those who know its value, and who are minded to pass it on to those still trying to work it all out”.

Thank you, Elly, for your wisdom, insights and top tips on living and dying well. Like the Commission you challenge us to think and behave differently.