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How would you design a dignified end-of-life for Alzheimer patients.

Could a dignified death be an option for those diagnosed with a disease that will diminish cognitive functioning?

Photo of Marije Haas
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Euthanasia is legal in some countries; in the case of a terminal illness and the patient themselves being able to make the decision to die.

But what if the suffering that is taking place is caused by loss of cognitive functioning? In this case euthanasia is no longer an option. 

I am wondering if there is a way that we could design a decision making support system to help plan a good death for dementia patients.

What if the next step of the 'quantified self' is the 'qualified self'?

• Could we design a system to help assess (personal) life quality?
• Could this system help patients as well as professional and non-professional carers make life-and-death decisions?

What is a provocation or insight that might inspire others during this challenge?

What if we can set and measure our own parameters that define our personal quality of life? Could we base life-and-death decisions on these parameters being met?

*FOR THOSE SUBMITTING TO THE CREATIVE EXPRESSIONS MISSION*

Visualisations by Chris Gruijters http://www.todesignfrom.com/, images from the internet...

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Photo of Mariah Burton Nelson

Of course, for some people, quantity of life is the goal, regardless - for religious or other reasons.

But the quality of life meter is a fascinating concept - and it raises other questions, such as: Who defines quality of life?

I've seen some Alz patients, including my father, who reach a state of contentment. The quality-of-life meter might detect that they are living in the moment, enjoying food and music and touch, not worried about the future or regretting the past - and pretty darn near to what Buddhists would define as enlightenment.

Yet... a few years before, they might have decided - that's not the way I want to live. They might have directed others: If I can no longer think rationally or take care of myself; if I must be dependent on others for all daily activities and no longer recognize my own family... please release me from that hell.

Yet... once people get there, it not necessarily hell, or not all the time. I'm not minimizing the pain of confusion, disorientation, lack of recognition of one's surroundings. That can be nightmarish (it seems) for the ill person, too.

I'm just noting that some of the things that healthy people define as essential for quality of life can disappear - and not necessarily ruin a person's life enjoyment.  

Over time, as our brains and bodies change (due to age or illness), our experiences, perceptions, and goals change too.

At the extreme, we need to be careful not to let young, healthy people define what old, ill people should want out of life, nor when they should die. Even if the young and old person are the same person.

Thanks for a great conversation, Marije de Haas  Aaron Wong, and others!

Photo of Marije Haas

Absolutely true Mariah Burton Nelson which is what makes it such a complex problem! You've given me a lot to think about!

Photo of Chiara Pineschi

Thanks Mariah for this insight. My grandad has recently died from Alzheimer's and I actually never asked myself the question "who defines quality of life?", since I always considered it just from my own point of view. Your contribution has given me input for reflections! Thanks again for sharing.

Photo of Marije Haas

Yeah Mariah Burton Nelson and Chiara Pineschi ,  I had been thinking that, if the person themselves can set their own parameters to define their own quality of life, we'd have a starting point. But now I realise that, of course, your definition of quality of life changes all the time throughout your life, and even our younger selves can't know what our older selves want! It seems so obvious now that you've mentioned it, but I never thought of it before. Thanks a million for this insight.

So, in context of your contribution Mariah Burton Nelson about your professor Sandra Bem, she must have decided that the quality of her life wouldn't improve, in her opinion, after a diagnosis of Alzheimer's disease. Would the point of diagnosis then be a time to reflect?

Having experienced my mother dying of Alzheimer's disease I feel now (at the age of 41) that I do not ever wish to go through this myself. Not for me and not for my family. But as you say, this feeling may change. Perhaps I can, better then my mother, accept to live just in the moment, and enjoy those moments fully. I guess the problem is, if I can't, it will be too late to take any action! And this is the huge timing dilemma with Alzheimer's.