Chris West, Wellbeing Services Lead at Harlington Hospice and the Michael Sobell Hospice, spoke to Harry Steele, our Communications Officer, about the importance of discussing end-of-life wishes, the transition from life to death, and the small acts of reassurance that can mean so much to a family. Harry writes below.
One of the most important, but often overlooked, things to address when confronting a terminal illness are our end-of-life wishes. These may be spoken of in a medical context, involving discussions around do not resuscitate orders, and at what point to stop life-sustaining treatment. However, what is spoken about significantly less is the actual manner in which someone wishes to die, the space they want to inhabit in their final moments. In her work focusing on the wellbeing of people who have a terminal illness, Chris West works with people to consider questions such as, “Who do you want to be there? Do you want to die outside, or inside? What music would you like to hear as you are dying?”. In some way, these might seem like the least important conversations, the least necessary for examination and questioning. But Chris asks these questions because each person is unique, and therefore each end-of-life journey is unique; “are these questions not in reality the pivotal ones?”
Each person is unique, and therefore each end-of-life journey is unique.
It is always scary to embark on a journey into totally unchartered and unknown waters. Whilst death and dying may always be concepts connected to fear, Chris believes that this does not mean that the last moments of life should be greeted with equal uncertainty and anxiety. “I’d like to break out those conversations so people actually realise that there are options available in death. You don’t lose control at the end of life and just die. It’s a transition period”.
Chris describes this transition from life to death as akin to what happens in a birthing room: “When someone comes into the world, it can be a very sacred space. Equally, when someone leaves the world it can be warm. It can be amazing”. Chris believes that when faced with the reality that someone is dying, rather than feeling totally unprepared and untethered, talking about how we can support those close to us on this journey can help those present feel more grounded. Chris explains, “A calm and warm space can be developed when we talk about death and the dying process, when we understand what is happening and how to help and interact with it. Even just learning how to gently hold someone up, or how to moisten their mouth if it is dry, can make those alongside the dying person feel less afraid and more connected.”
A calm and warm space can be developed when we talk about death and the dying process, when we understand what is happening.
Chris shared one particularly poignant story:
“I had been called in as a Wellbeing Therapist to someone’s house. It was obviously really the last hours, possibly days, of their life. I walked into that house and there was just this sense of peace and calm, it was lovely. The lady was in a bed in the downstairs room and her five daughters were all there, I suppose they knew it was near the end. You could hear the grandchildren in the other room. I went in and met mum and she greeted me saying ‘Hello, do you want a cup of tea?’
I spoke to one of her daughters and I just said, ‘You know what, I don’t think mum really needs me because you have absolutely got it, it’s beautiful in here. It’s peaceful, she is at peace. She is happy. There’s nothing I can do.’ She just started crying. She went to get the other four sisters and said to me, ‘Tell them what you just told me.’ So, I repeated, ‘You’ve got it, it’s beautiful in here. There’s nothing I can do.’ And then they all started crying.
They were all so grateful and I did nothing! All I did was validated what they were doing and that was so powerful. So, it just goes to show that sometimes it doesn’t take very much. It was lovely for me to walk into that space. She died, I think it was early next morning and it was such a peaceful day.”
All I did was validated what they were doing and that was so powerful.
This short anecdote perfectly highlights why it is so important for all of us to talk about the end-of-life journey and end-of-life wishes. In doing so we can become less afraid and more able to support those who are dying in the way they wish to be supported. Our Wellbeing Services hope to support people to live to the end of their life in their own way, and ensure that families and friends understand how they can play a role in facilitating this journey to be calm and peaceful.