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 supper (mine’s a 1970s style prawn cocktail followed by crème brulee), 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. Previously I’ve boasted that ‘when it comes to it – put me in a home I don’t want to be a burden’, which is actually not true! In the past 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 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 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. She wanted me, not a nurse or care worker, to bathe her. She left specific instructions as to how her funeral should be and, controversially, who should not be there. And rather usefully 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.
There is one certainty, however, death is inevitable. It may come when we are old and at the end of our natural life or it may come suddenly because of an accident or an illness. Because it is a given, we can (if we choose) plan to make it the best experience it can be – living as we would want to until the very end.
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 complete change of direction having been a HR Director. Sentimentally, I will sometimes say that my Mother set me up for this volte face. I don’t know about that, although she certainly kick-started my education on how to die.
End of Life Doulas support, offer companionship and walk alongside a person living with a life-limiting illness and 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 Living Well Dying Well
Earlier this year with a small group of my Doula colleagues we decided that an important part of our role was to try to take away all the mystique, fear, legal and medical jargon which obstructs people thinking about and planning for what they would like to happen at the end of life. We wanted to open the door for people to regain 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 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 – these are not legal but do inform others to act in accordance with your best interests), 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 and for this to be put in writing 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 and who is to say I will not change it again when I am actively 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’, the medics taking control 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 no difficult decisions to debate 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.
So to get back to being a Doula. As well as being with people at the end of life we are now working with individuals at any stage in their life to undertake their own advance planning. We are also out and about in communities to raise public awareness on advance planning
So thank you to my Mother, Jean Bonfield, and to Living Well Dying Well. With my colleagues we are now ready to work with others who want to have an Advance Plan.
I can’t change the direction of the wind but I can adjust my sails to always reach my destination – James Dean
A.D.
