Assisted Dying, in which Paradigm?

It’s been a week of questions coming in at Sacred Circle HQ about our stance on the Assisted Dying debate in the House of Commons, people asking what our views are on it and also whether our role as Death Doulas will change. 

I, for one, have been somewhat ambivilant about the debate to date, although it is certainly about to get very interesting as conversations are opening up about the state of our current palliative care systems and what resources might be needed to support a good “end of life”? 

The reason that I am ambivilant is that it doesn’t change a death doula’s role as much as you would think. In time, should Assisted Dying become legal in the UK, or anywhere our death doulas practice; we would very conceivably be asked to come alongside as a companion to help a person and their family prepare, we might accompany them in person, we would almost certainly support their community and family afterwards. 

The cause and manner of the death would change but the reality of the death doula role, not so much. We are never an instrument of intervention, we never involve ourselves in directing or influencing another person’s decisions. We must remain enduringly neutral and only champion and advocate for the express wishes of our clients. 

It serves us to remain neutral too about the rights and wrongs and ins and outs of the Assisted Dying debate since associating our name and reputation with controversy would impact us at a personal and collective level. Whatever our personal views, we shouldn’t in my view, ever use the fact that we are death doulas to lever debate one way or another. 

In many ways, the Assisted Dying debate belongs in a paradigm that we as death doulas only partially overlap. The Assisted Dying debate belongs in a paradigm where Death is a medical event, where we understand decline, disability, illness, dying and death in solely medicalised terms. Death is a medical failure; and declining into illness and dying is seen to be a tragedy and a travesty. Unspeakable taboos which cause society to pull back and no one knows what to say. 

This paradigm is living on borrowed time itself. Ultimately, life and death are as cyclical as the seasons of the year and the turning of day and night. The threadbare nature of our community response to death and dying is the net result of centuries of abandonment of the wisdom of the village; the power that is given to or projected upon the medical profession is power that rightfully belongs to the People (including the people, the humans, that wear the masks of “professionals”). 

I won’t lie, it has repeatedly crossed my mind that if I were to receive the same diagnosis as my mother I would immediately be keen to get on the Assisted Dying register but, not really… but maybe, yeah, maybe. My own mother would not have qualified for Assisted Dying under the current proposed changes in UK law, she had lost capacity to make decisions for herself a long time earlier than 6 months prior to death. 

I wonder to myself how it could have been different. My mothers wishes were to live with me and die in my home; however we couldn’t mobilise resources fast enough to make the adaptations needed. All medical and social care opinions were against that option anyways, her needs were best met in Nursing Care. She was devastated that we put her in a care home and for me it was the greater grief than her actual death. What would Parkinson’s have been like for her if she never took the medication for it in the first place? Would she had suffered differently, longer or less? 

If I were in her position, at the point she was at in 2020 when she got her diagnosis and still had capacity, if I were in that position myself I would personally like to try whatever the plant kingdom had to offer before reaching a probably unbearable level of suffering where I would then cease eating and drinking and have a whole community of people hold me while I surrendered my last breath. The suffering would be a factor in making the transition easier. I would much more easily surrender attachment to life if I was in untenable pain.

This fantasy endures but what is reality?

I laugh quietly to myself because my mother was more of a radical anti-big-pharma hippy than I am. She sucked her teeth and frowned that I took painkillers for period pain. She never so much as touched an aspirin until Parkinson’s and Dementia got her and all of a sudden she was begging for prescriptions, she rattled her way through the day on something like 12 different pills, some at frighteningly precise times, she became preoccupied to the point of obsession and drove me to insanity. We had to lock her medication away from her and put up with the hours of pleading and begging for it before its time came due. 

If Mrs You-Can-Heal-Your-Life and Bach-Flowers-Cure-Everything can plunge into a state akin to a wailing junkie in a couple of short years then who am I to think I could manage my own decline with herbs and deep breathing? 

And do I judge anyone who doesn’t? No, the answer to that is No, I do not. Everyone has their path, I believe, and everyone must do what is right for them. 

I just know in my heart of hearts that everything our modern society thinks it knows about death and dying is flawed. Our modern lifestyles are governed so tightly by internalised capitalism that we cannot fathom a reality where pain has its stories, that trauma needs to be mourned, that unless we take time to rest then in time we will become de-pressed, rest will come find us and we will be too tired, fatigued, too burned out to function, unless we practice receiving care in the prime of life we will resist and struggle to receive care in our decline, fearing ourselves a burden. Unless our communities put down the smartphone and start to pay attention to what and who around us need our shared collective holding, then when it comes to our turn we will only be able to get help by sharing on social media we need it, and no one locally knows how to find you nevermind how many prayers you are sent from the other side of the world, in real terms you will be alone. 

So, the Assisted Dying Bill… yeah, it’s interesting. I don’t have an opinion on it except that I am, by dint of being a doula, Pro-Choice. I think the idea of “choice” is nuanced. I think the nature of freewill and self determination is wide open to debate. I am not sure what sovereignty looks like in this hyper individualised world. As a death doula I am in service of Death and Dying in all its forms, not just palliative and end of life care but sudden, violent and unexpected death too. I look at the World and how fast it seems to be spinning, the earth is scorched and the waters are rising. So do we have the decades of debate ahead of us, realistically? Or do we need to start to prepare at, a grassroots level, a community response to death and dying that is extra-institutional; so that as the towers collapse those who would be damaged in their fall have places and spaces to take refuge in? 

Death Doulas must always for their safety and those of their clients and their families, abide by the letter of the law in the country they serve in. We can be (re)building new (old) ways of being that see differently and speak a different lexicon. One in which the elders, the vulnerable and the dying could never be a burden because they would have so much to teach us, by their choices, by their example and by the manner of their deaths. Deaths that medical science can be a servant of, but never the master.