The following piece was written by Aly Dickinson, Co-ordinator at Living Well Dying Well and Secretary for End of Life Doula UK, who will be speaking at our event: Pragmatic Solutions to Care Problems
I can’t change the direction of the wind but I can adjust my sails to always reach my destination – James Dean
Over the years I’ve had sadness, belly laughs, nostalgia, regret, transitory deep and meaningful conversations about death and dying. With friends and people I love, we’ve had wine fuelled banter and sober dialogue. We’ve speculated on dramatic, rock star endings; what to have as a last meal; choice of funeral music (the play list changes regularly); cremation or burial; a bucket list (doesn’t include swimming with dolphins or writing a novel), organ donation or not and so on. In the past I’ve suggested that ‘when it comes to it, put me in a home. I don’t want to be a burden’ but I would hate that. I’ve sallied that someone will have to switch the machine off if I am ‘out for the count’ (not understanding what that really means). All these conversations, whilst sometimes entertaining have been inconclusive and haven’t led anywhere.
When my Mother was dying, reality bit. This was the early stirrings of an understanding that planning for dying and death could be positive and life-affirming. She taught me an important life skill. My Mother had a late diagnosis of non-Hodgkinson’s Lymphoma. It was high grade. She could have bought six months of life (or as she looked at it more dying time) with Chemotherapy. In the face of opposition from her oncologist and other family members, she elicited a promise from me to allow her a natural death. During the last two months, my Father and I sat with her for most days and nights. She was clear about what she wanted and did not want. This included the food she fancied (fresh, chilled mango was a favourite ), the family and friends she wanted to see and those to be avoided; a request that the people around her should move noiselessly and speak softly; a list of the films she wanted to watch and the music she wanted to listen to; and most importantly no medical treatments apart from pain control. She wanted me, not a nurse or care worker, to bathe her. She left specific instructions as to how her funeral should be – and who should not be there (ooh la la!). She left a will.
I don’t want to sanitise or portray that there are any guarantees that this death and dying business can be pink and fluffy for all of us. It can be messy, nasty and difficult. In the past I have seen a person die, lonely, starved of love and affection, on a noisy public ward in an overstretched London hospital without adequate pain control. I have seen a person die in a care home, resentful about being there – deeply depressed and distressed. Now I know it doesn’t have to be that way.
Death may come when we are old and at the end of our natural life or it may come as a result of a terminal illness, or suddenly from a stroke. Because death is a given, we can plan to make it the best experience it can be – living as we would want to until the very end. At the end of life we may not be able to articulate what we want. There are 850,00 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051. 225,000 will develop dementia this year, that’s one every three minutes. 1 in 6 people over the age of 80 have dementia. (Source Alzheimer’s Society)
About two weeks before my Mother died she asked me what would make me happy. I couldn’t answer her. Ten years later I stumbled across the answer in an article in the Guardian by an End of Life Doula called Rebecca Green. I started the training as a Doula and I too am now part of the growing network of End of Life Doulas. This was a complete change of direction having been a HR Director. Sentimentally, I will sometimes say that my Mother set me up for this volte face; She certainly kick-started my education on the dying experience.
End of Life Doulas are companions, offering support, walking alongside a person living with a life-limiting illness; their families, lovers, close friends and those important to the dying person. We are a consistent and flexible presence – there whenever needed to fill the gaps and provide practical, emotional; and spiritual support if required. We’ve been trained and our work is overseen by End of Life Doula UK.
Two years ago, with a small group of my Doula colleagues, we decided that an important part of our role was to try to demystify the dying process – to simplify the legal and medical jargon which obstructs peoples’ thinking and planning at the end of life. We wanted to open the door for people to gain a sense of control over their death and not hand it over to the medics and so-called experts. So, we put together information which was simple, accessible, and uncomplicated to work alongside a person – at any stage of their life – to plan for what they would want when the time comes. It is simply the person’s choices, expressed in writing, about where they would like to die, the treatments they would want (or not) to receive, how they would want to be cared for emotionally and physically, what their wishes are for their funeral, the values they hold dear, and to be respected. It includes the name of the person they would wish to speak up for them should they no longer have the mental capacity to voice their own choices and wishes. It is everything and anything that is important to that person to make their life as best as it can be until they die.
As Doulas we have the skills to have these conversations. We provide supportive and safe ways to facilitate this planning. It’s the person’s very own blue-print for dying which truly reflects their choices and wishes. The plan can be updated and changed at any time to reflect changes in circumstances, views and opinions.
I am so sorry to lapse into officialese at this point, but these plans can include the individual’s Advance Decisions (legal); Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) form; Advance Statement or Statement of Wishes (was called a Living Will); Lasting Power of Attorney (health and welfare, as well as property and financial affairs); Funeral Arrangements; Digital Legacy and so on. But what is important is that the person has the opportunity to talk openly, honestly and without fear about their choices and wishes for the end of their life; for this to be put in writing, and to be given to those who need to know – including the medics.
I have done my own plan; I’ll review it every now and then. I will no doubt make changes when I am dying. That’s ok by me, as now I have thought about it and I have more of a chance of not being dictated to by ‘the system’ and to have things happen to me which I would hate. I am also comforted by the fact that it will make life simpler for those I leave behind – they will know what to do, they will have not have to speculate or have difficult decisions to debate over and make. I have chosen a person to be my advocate and speak on my behalf to ensure my wishes and choices are respected should I have dementia.
As well as being with people at the end of life, Doulas are now working with individuals at any stage in their lives to undertake their own advance planning. We are also getting out into communities to raise public awareness on advance planning So thank you to my Mother, Jean Bonfield, and to Living Well Dying Well! With my End of Life Doula UK colleagues, we now work with others who want to plan for what they will want for their dying and their death.
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