My blog is a bit rambling today, as it talks about death and dying, cognitive capacity and other related topics. Sorry if I should have made it three or four blogs, but I’m here so rarely these days, I took the chance to finish writing it, and this is what I (therefore we) have ended up with!
Death and dying has been something I’ve not been afraid of for almost forever, to the point of choosing my plot in a cemetery before I was 17, and which my grandfather bought the 50 year lease for me as my 18th birthday present. I actually lost that plot, before I was diagnosed with dementia, but that is another story entirely! My blog today is partly about planning for dying, or at least, for how you might want to be medically treated in the case of a major health trauma, like a brain injury, end stage cancer, or even end stage dementia, and the value society places on cpgnitive capacity, although there are a few extra topics on the same theme thrown in!
Death and dying… and Advanced Care Directives
At the age of 18, when it was legally possible, I made my first will. I did not at the time, think about advanced care directives, but I did take out private health insurance then too. At the age of about 21 or 22, I also took our life insurance, critical illness insurance and a policy to cover loss of income if unwell and unable to work. I’m not even sure, apart from the insurance broker, anyone knew about these policies, except for my bank account, from which the monthly or annual payments came from, but to say they have come in handy in an understatement.
Over the years, I have updated my will a few times, and in the last 20 years, have also had advanced care directives. I’m not sure they were called that when I did them originally, but in South Australia, these were updated and can be done online now, and I recommend everyone get involved by making their own plans for life as well as for possible ill health and death. But a dear friend and I often say, “anything can happen to anyone, at any time”, and no one can truly predict their future.
But why have ACD’s, if they are ignored?
I learned recently through personal experience as an inpatient at the old Royal Adelaide Hospital that if I’d had a major life threatening experience as an inpatient, they would not have honoured my advanced care directives, because “I looked young and fit, and still seem too functional”. However, my ACD’s state very clearly, Do No Resuscitate nor keep alive by mechanical means, in any way. If I cannot breathe on my own, eat or drink without assistance, I do not wish to be kept alive by some machine or tube.
I’ve watched people die, sat with them while they were starving to death as they did not want to be kept alive in the later stages of dementia and cancer, and as a nurse have been involved in death, dying and illness many times. I’ve since been advised to update my directives, and state that my estate can be used in its entirety to sue the person or organisation who chooses to ignore my Advanced Care Directives. I recommend everyone not only gets their affairs in order, but does this as well. It really should not have to be that hard.
It seems just like a babysitter said to one of my very young sons one day many years ago, “Which part of the word NO don’t you understand?”, people with active ACD’s seem to need to make it very clear, “Do not resuscitate, really does mean DO NOT RESUSCITATE”.
A conversation following a near death experience.
Someone I am very close to recently had his second near death experience (his words), and we had a long discussion about end of life matters. He does have legal guardians in place, but did not have his ACD’s in place, and since our discussion, has gone away with a printed version of all of the documents available on the SA Health website. I recommend everyone gets their affairs in order, and that you don’t wait for a critical illness or near death experience, as if you wait until you have a critical illness, you may feel too distressed to think about it, or you may have a sudden illness or accident and not be able to make the decisions for yourself.
The most interesting part of this recent discussion after this ‘near death’ experience, was that I discovered, as one of the legal guardians for this young man (under 30), was that he would want to be kept alive. He clearly stated, for my benefit as one of his guardians, and I quote:
“If my ‘body is f***ed’, but my cognitive capacity is ok keep me alive, but let me die if my ‘brain is f***ed’, even is my body function is ok.”
Cognitive versus physical capacity: what’s the big deal?
I found this truly fascinating, and for me, it highlighted the weird value most of us place on mental or cognitive capacity, This helped make it a little clearer why dementia and mental illness are both still so stigmatised, and in other ways, muddied the waters even more in my understanding of this!
It really made me wonder why cognitive capacity, including having a high IQ is so valued. I would say, cognitive capacity is over valued, as know although I no longer have a very high IQ, my functional capacity is still quite high.
Maybe this is also why so many people without dementia still systemically underestimate the capacity of people with dementia to be functional at all?
Finally… think about someone giving consent for images or filming of you to be used publicly, when you don’t have the capacity to decide for yourself?
If you have dementia, or any other life threatening illness currently (bearing in mind you were all born with a death sentence), then I recommend you think about whether you would be happy if someone takes photos or films of you when you no longer have the capacity to consent, to be shown publicly. I am adding that to my ACD’s as well, as if anyone uses images of me like that, my guardians also have permission to sue them.