Cognitive vs Physical capacity

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.

22 thoughts on “Cognitive vs Physical capacity

  1. Wonderful to read from you Kate! Thank you for bringing to our attention the fact that the overvaluing of cognitive capacity connects to stigmatizing of people with mental health issues, dementia, and/or conditions that may lower or obscure I.Q. I have known several people who had diminished cognitive capacity but were still incredibly loving and “present.” What a terrible loss if we miss connecting with people who are still here to be connected with. (We grasp the joy of connection more easily at the other end of life: young babies can’t talk, but what a loss for everyone if adults ignore their smiles and delight in being alive!) Understanding more about all of this could transform our own feelings and our cultures’ responses to aging and death.

  2. This is very thoughtful and thought provoking. I love the idea of adding the statement about suing those who go against your directive. I also love that you speak about society valuing cognition above all else. Society needs to understand that a person can have a very fulfilling, joyful life even when cognition is failing. Sometimes declining cognition can free you up to be the person you were always meant to be.

  3. Wow, that wasn’t rambling at all, Kate, that was very cohesive. All your points point to the problem of us over-valuing our cognitive abilities. You’re right, this very much is the problem with the stigma attached to Alzheimer’s, and probably why so many people refer to it as a “dreaded” and “horrible” condition or disease. Get over it! If the mind works less, other things can compensate. It should be all about balance, not “one or the other”, and it should be about honoring the soul, not the body or the brain. I really enjoyed this insight from you, thanks so much for illuminating my day.

  4. Yes indeedy! I also take on board the comments from a retired RN friend, that it’s irresonsible to not have planned for one’s own care, as well as EOL and what remains of us materially.
    I hope to be able to rectify these omissions for myself before 2018, once I get a break alone to think about it quietly, have discussions with close friends and tie off all loose ends.
    All I care about is freedom from pain and from being “locked in”.

  5. I have often thought about which is more challenging loss of Cognitive or physical capacity so thanks Kate for putting yourself out there by sharing your thoughts

  6. Wow Kate-these are amazing tips thankyou-and i will show my family members as we might be experiencing grief in the next few days, years or months. We are experiencing grief because my Grandad is almost at the late stage of dementia, and with his Alzhiermers we dont know how long he has left-as your aware we never know what will happen the next day with Dementia and my Nana because she has a weak heart and her physical health has really deteriorated in the past 4 months and hasnt improved and same with her mental health-i have found a few test to see if she has dementia or not. That quote is so true-you never know if you will get Cancer or dementia or collapse. An example of me which is a personal story is…2 years ago i was running a 10km running race at whangamata and i collapsed while i was running and it was extremely sudden and “out of the blue”. That morning about an hour before the collapse i was feeling great healthwise and eager to run and then an hour later i went from feeling fabulous to feeling as sick as a dog and being lifted in a helicopter to auckland city hospital-so health does change very very very quickly. One of my dads friends made fun of my collapse and if obsessed with my medical history and was going on about how his mum(who survived bowel cancer)had some of her stomach removed and i was thinking “oh forgodnesssake you never know, it might happend to you one day” life is unpredicatable. I have seen the process of dying before. I was 6 and my “little nana” passed away. She had bad health for a few years and had Alzhiermers too but fortunately not that bad. The last 2 years she was basically in bed and didnt go out of the house(other than to my nana(who is now unwell)and my popas house) and couldnt walk and i visisted her while she was dying and she wasnt talking and was very very ill. I can remember seeing that process-9 years ago now. My great grandmother(my dads grandmother)passed away 12 years ago and she was 97 and was in amazing health till the last 6 months of her life. In the last 6 month she went into a hospice and my dad used to take me to visit her and see her while she was dying-i have no memory of that though as i was only 2. This his really helped me and i know that hospices arent as nasty as we all think they are. Hey, have been watching some of your videos and they are amazing!Well done! I like that saying “dementia isnt like a birthday party”-so true hopefully my family members learn a few things from this!?Maybe you should do a further blog post on that saying to make people more aware! Thanks for the interesting information Kate-thats it from me for now-take care, have a great day and i really look forward to meeting you if im in adelaide or your in Nz-lots of love💜

      • Thx Kate for your lovely reply-its my grandads(who has Alzhiermers birthday)on sunday and he will be 87 and we are having a special family dinner as this could be his last birthday. I too hope we meet one day-let me know if your every in Nz!Take care too

  7. Thanks Kate for this post, I agree this does bring up a range of issues. I particularly appreciate your final points about cognitive vs physical capacity, and consent for images. Your comments make me think about a lot of the (research) interviews that I have done with people about their views on writing advance care directives, and how common is this idea of cognitive capacity being more highly valued than physical, or other domains of capacity. As this idea is unpacked it becomes clearer how peoples’ ideas about cognitive incapacity lead to their different assumptions and views. Some believe that they will have lost their identity (“I won’t be me anymore”), others that they cannot contribute to their community or that they will be completely dependent on others. For others, with further discussion and reflection on their experiences caring for others, they realise that actually they would be able to adjust and adapt to a range of conditions. With more detailed discussion, people are often able to understand the issues in a more nuanced way and come to a decision that better reflects their deeper values. Some even come to the view that with loss of capacity in certain areas, they might gain other capacities (e.g. the capacity for deeper love, connection or the wisdom that comes from experience). For me it reminds me of the importance of open and detailed discussions with family, friends and professionals, about the values that actually inform the advance care directive. Of course, this is based on my experience with research interviews, and may not necessarily reflect how people express their views in actual clinical situations.

    And in terms of the consent for images – yes I couldn’t agree more!

    Nice to see you and hear you speak recently. All the best,
    Craig

    • Lovely to see and chat to you too Craig, next time, we need to be more organised and have a meal! For me, dementia has been the third greatest gift in my life, although at the same time, caused some of the deepest pain, but that was not due to dementia, but to the way people treated me. As my husband says, I am much more creative than used to be, so the neuroplasticity techniques I’ve bbeen using must be working! Take care, and thanks for joining this particular conversation.

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