It was one of the things that I had hoped the hospice might be the right kind of environment, just to open up a conversation of the possibilities, for somebody thinking about writing an Advance Directive. But unfortunately it wasn't something they seemed able to do. And it ended up being something that was talked about with the district nurse and the GP. I felt that it was actually something that I would like to have managed with Mum herself, and been given the information that I required to do that, or have had somebody in to facilitate my doing it with Mum. Because I think once she'd made the decision to die at home, her death was something we were all going to be intimately involved with.
It was a really tortuous process. I wasn't clear whether the practice had much experience of Advance Directives. Up until that moment the practice hadn't actually had a relationship with the MND clinic. It was me who co-ordinated getting hold of the draft documents from the MND clinic. In fact I typed them up and e-mailed them to the practice. We were given completely wrong information from the MND clinic about what needed to happen to an Advance Directive. We were told that it had to be signed off by the consultant, which in fact is not true, it has to be signed off by a GP. And I looked at it and it didn't seem to me actually to be very difficult. It seemed to me actually a process that we could have had done and dusted very quickly, and the main bit in it really was, “If you become unconscious, what level of sustenance would you like? Or would you like just to be left alone to die?” And once somebody explains to you what process the body's actually going through at the point, that you lose consciousness, then actually it's a very clear decision. You know, you don't want to hydrate the body; it's completely the wrong thing to do. So this seemed to take about two weeks to go through that. And it was people coming and people going, and it all felt very tense to me. And then Mum's answers went up to the care co-ordinator, and nothing happened, and having thought that going through this really difficult process one actually would get the signed and sealed document back within twenty four hours, two weeks later I was really getting very irritated about it, and I was also feeling very unprotected. My biggest fear was that if there was a drama and I had to call 999, I had no choice but for Mum to go in an ambulance, and everything that that means - the care is out of control. And it felt very unsafe not having that directive backing us up. I mean, my recommendation is that Advance Directive is talked about actually quite early on, no matter how difficult it is to introduce it early because at least you can do it and forget about it. To do it at a time where death is imminent and thinking through these things is tricky. And not having your carer involved at that time because perhaps you feel it's too sensitive or whatever, leaving it so late that the carer feels unsupported, is not the right thing to be doing. It's something that should just be tackled as a piece of business early on, and then put away, reviewed if necessary at some other stage, but not left until the last minute.
And who should that come from? That initiative, do you think?
I suppose it really depends on who is the closest to you in your treatment, which person in the medical world. For us it was a district nurse who happened to be somebody who had worked in a hospice and so was actually entirely capable of introducing the subject without difficulty. But I think if a relative feels capable of doing it, then they should be helped with some level of medical expertise to talk that through with the relative. Because I think it promotes a decision of where somebody is going to die. And on the business of dying at home, I think it's interesting. I think that there is a focus towards dying in a hospice. For me the idea that you would move a body at a point where somebody is very ill and take them to some place to be managed, to me that seemed completely inappropriate.
Footnote: It is not essential that a doctor signs the Living Will, but it is recommended, to show that he or she fully understands the person's wishes about treatment. It is important to ensure that a copy of the Living Will is placed in the person's medical records, and that the relevant people know that it is there. |
