This post was written in draft some time ago. It references an event at Sophia that I wrote about here, and is really a little tribute to someone I worked with who has now died. I tussle with writing about work (as indicated below), and am sure that my reticence and uncertainty about doing so prevented me from posting this at the time. However, more time has passed, and we have run another ACD group now; they are so positive and useful, that I thought I would put it out there. I don’t want to put up a post without pictures, so am including a couple of photos of the work of Andy Goldsworthy – fantastic Scottish artist of the natural world, whose work reminds me that everything and everyone will go, including the lovely D (but while we’re here life and the world is amazing, tender, vulnerable, beautiful, fragile, strong and all the rest).
I don’t write about work very often on this blog, partly because it’s hard to work out how to do so without breaking anyone’s confidences. However I have been thinking of someone I worked with in light of the session at Sophia last weekend. Mag spoke (and read part of a piece she had written) about her father, a determined, honest, clear-eyed man, who took charge of his life right to the end, and refused to end up where he didn’t want to be – dependent on others and ensconced in a medical system which tends to deny death. This isn’t always easy to achieve, and it is a wonderful thing that he managed it. For some people, preparing an Advance Care Directive can be helpful in taking some power over how our life might be if we become very ill or are near death.
In the past few months at work, we have run a series of sessions for people who want to write their ACD’s – this is the legal document that conveys to doctors and health workers our wishes in the event that we can’t actually tell them what we want. It has been terrific to do this – to talk about death, illness and painful possibilities and help people to think through what they would want in different scenarios. One woman, D, came to the first of the three sessions, but went into hospital before the second one about three weeks later. She had not had time to write up what she wanted, and then there was the step of getting her substitute decision makers to sign the form and for it to be witnessed.
I was seeing D individually for other things and this gave us the chance to talk more about what her wishes actually were, and to go through various options for different situations. It was clear that her health was pretty bad, and she herself was really sick of being sick – she had had very painful and difficult conditions for many decades.
It would have been possible to get one of the social workers from the hospital to work with her when she went in, but she preferred us to keep going together, as she already knew me. I went into the hospital a few times, and helped write out her ACD. She then organised for her substitute decision makers to sign their part of the form. It was challenging to get a JP to witness the document – the hospital has very few staff members who are JP’s at present, and we couldn’t find anyone on the days I was there. I ended up going to the local library, who have JP’s on duty every day, and talking to the guy who was on at the time. He was a champion and said he had previously gone into the hospital to sign papers for/with someone, and would be happy to do that in this case. We organised for him to come in and the deed was done.
D said that she felt a great sense of relief at having her wishes written down, and that it strengthened her ability to say more clearly what she did not want as she went through the various stages of her illness. Shortly after she completed the document, she was transferred to the new Royal Adelaide Hospital, which she said was very swish… After more time in hospital she died. I don’t know how or even whether her directions on the ACD came into play, but I felt really pleased that we had done it all, and that she had a chance to say to her family and to health workers what her wishes were. She was a lovely person – very stoic and unassuming, warm and wise, and I will remember her. I feel sure she would want to encourage anyone reading this to work out what you want and make your wishes known. ACD kits can be found here if you want to get yours done! It’s worth it…