I am very fortunate to have had a very happy, healthy and fulfilling life. I don’t think it is my time yet and certainly I don’t want to leave – too much to do – but having spent the last 10 years immersed in the subject of death and dying, I know it doesn’t always go to plan.
I wouldn’t be much of a death educator if I hadn’t frequently confronted and contemplated my own death during this time. I have arrived at a point where I am clear. In the current circumstances, I do not want to die on a trolley in A+E or in an Intensive Care Unit attached to machines and surrounded by people in protective gear, too cautious to touch me skin to skin, in an atmosphere of fear and anxiety.
This is not to say I don’t understand the importance of extreme measures and the precautionary approach. I am very proud of our health service workers, who are doing everything they can to save lives, often at risk to themselves. But it’s not for me.
I have been observing the response to the virus or what I call The Little Blighter (TLB) and the death rate, especially in the media. Every death will give rise to the pain of loss for those who are close – it may be the most difficult thing we ever experience and it can take us to the edge. I do not underestimate the threat to human health, the suffering and fallout this is bringing to individuals, societies and world economies. On the other hand I am aware that fear of death and our lack of preparedness for it, lurks in the background and is behind many of the behaviours we are seeing and some of the decision making. We still shy away from talking about it.
I have been fortunate to witness many deaths and even though I do not have religious beliefs, I do have a spiritual perspective which sustains me. These experiences have informed my perception of death as a simple and beautiful transition, one that we do not need to fear. I am curious to know how many others think as I do, that death is not the worst possible thing that could happen – although the manner of my dying might be.
It needs to be said that most people will experience a mild form of this disease and having it does not equate with death. But if I should succumb to TLB, I will choose to opt for comfort care and non-hospitalisation, or critical care. This is why I am updating my Advance Decision to Refuse Treatment, (we should ALL have one) to specifically reflect my wishes.
My choice – relevant to me, my age and circumstances is partly altruistic and partly self-serving. I really don’t want to take up an ICU bed when it might be needed for a younger person with life ahead of them, or contribute to the infection rate in hospitals, but also I would like my dying time to be as uninterrupted as possible. I would rather trust the process of living into death, preferring quality over quantity. If my body can no longer sustain itself and is overwhelmed that is good enough for me.
I realise there are no guarantees, but I have found it quite liberating to identify how I would like my death to be. In my case it would ideally mean being pain-free, no drama, an atmosphere of loving, peaceful, calm with loved-ones nearby. This is not a fantasy death – I have seen many like this in homes and hospices. For sure there can be ups and downs and times of suffering – dying can be difficult – it is a mysterious process, but one that is not without meaning and purpose. Being clear about our wishes is not only good for us, it helps to guide our nearest and dearest and medical practitioners, freeing them of having to make difficult decisions about life sustaining treatment on our behalf.
TLB is showing us the extraordinary interconnectedness and vulnerability of all life. It is very challenging to realise we aren’t as safe as we thought we were. Being faced with possible illness or death on such a scale is a wake-up call. We may not be able to change the reality of TLB but we can examine our response to it. I think it is a real opportunity for us to reflect on what is important to us as a humanity, perhaps seeing it as a chance to rethink our priorities, individually and collectively.
I will need help to have the death I want, and I wonder what it might take for our families and community services in these extreme times, to be able to cope with people like me who would choose a comfort care approach at home? Especially when it seems much of the focus is going into increasing intensive care provision. I wonder whether GP’s are stepping up to have conversations with their vulnerable and elderly patients? Do they know their wishes? It seems the experience in Italy is leading doctors to see community-centred care as being the best option. Link https://www.statnews.com/2020/03/21/coronavirus-plea-from-italy-treat-patients-at-home/
I wonder too how many of us as citizens, would have the courage to say: “I choose comfort care”. This could be a big ask when pressure from families, friends and professionals might be to the contrary. I wonder too how we further inform and educate families to have the confidence to take care of their dying at home, if that is what they choose. This is the work that many of our Doula’s have been engaged in and will continue to, remotely if necessary, in the weeks and months to come.
A lot is being asked of us in these extraordinary times and being clear about our wishes, putting them in writing, whatever they are – for comfort care or give me everything possible – may be the biggest gift we can give to each other and society at this time.
In the meantime, I am doing all I can to stay safe, following the advice to isolate, while giving my immune system a boost, in my case with Vitamin C, Echinacea, breathing exercises, and lots of water and sleep. Most important of all, I am aiming to take advantage of the great big pause button that has been pressed, to quieten down, reflect, pace myself more while I learn to live as if each day is my last.
Hermione Elliott 22/3/20
For more about Advance Planning materials www.compassionindying.org.uk
For personal help with Advance Planning and to arrange a conversation with a Doula if requested www.eol-doula.uk