this is a really touchy subject because while i think most people prefer quality over quantity, how they choose to define and approach this can vary wildly.
5 months ago | 13
My brother died of cancer when he was 59 and I had guardianship for when he wasnt able to make decisions for himself. During a code blue event where his bp dropped very very low while his oncologist was seeing him, the staff asked me what I wanted them to do and not do. Thinking about my brother, I knew he wouldn't want to be kept alive by a ventilator, have cardiac paddles used on him or even chest compressions which in an emergency, risk breaking a patients ribs. I said no external devices were to be used to keep him alive but they could give medications through his iv to try to stabilise him. Thankfully, he survived this and a few days later, was able to have his own conversation with his nurse and he decided to start palliative care so all medical treatment aimed at prolonging his life ceased and he was just given pain meds and the morphine was also given to ease any possible respiratory distress. He really quickly went into a coma and died a really beautiful, peaceful death 2 days later with a nurse holding one hand, me holding the other as I reminded him of how loved he was and asked him to hug our other brother from me when he gets to meet him on his next journey. 6 months later was a very similar situation with our mum, I made the same decisions for her about no invasive, life prolonging treatment and again, thankfully, was holding her had as she took a very peaceful last breath. Dad and I also want the same decisions made when our time comes. ❤❤ Mel
5 months ago | 4
In my experience as someone who worked with many with dementia, I would have to say the quality of life depends a great deal on the caregiver(s). I've seen so many in facilities neglected terribly. Without John, Heather would have very, very little quality of life imo, despite the great place she is in. As lost as some may seem there is still the familiarity with family and loved ones, and NO ONE takes care of a loved family member like another loving family member.
5 months ago | 10
Early on after Heather was admitted to long-term care. I had a meeting with the hospice nurse and we discussed this very topic. I ended up signing a do not resuscitate order meaning that she would not be given CPR if she had cardiac arrest. She also wouldn’t be checked into a hospital for therapy or treatment. I was kind of staggered by the whole decision making process, but it only made sense and I know that Heather would have agreed with me, don’t be silly… Let me go.
5 months ago | 1
Have been caring for my husband, the love of my life, who’s had Alzheimer’s for the last several years. He was misdiagnosed at first and within the next yr he had declined considerably. He is now in late stage 7 and recently needed the care of a memory care facility. Our story is similar to John and Heather’s. Same move in date even, I believe. My hubby was placed on hospice and could no longer walk or even stand to transfer him to wheelchair or back in bed. Many scary falls. I visit him daily, multiple times usually and definitely he has bad, foggy/sleepy, non communicative days. And still has a more lively, pleasant, clearer day from time to time. He still knows me but struggles with our kids, grandkids and friends. Once he no longer finds any joy at all in this life I do hope and pray he is spared that sad heartbreaking hardship. As well as the family. We both have DNR’s and family knows my wishes for myself should similar fate happen to me. Such a mean cruel disease. With much promising possibilities on the horizon these days. There is hope!
5 months ago | 6
I'm not in the right headspace to comment on this honestly, but in safer times, I would say a good quality of life is the only "true" measure of life, whereas time in agony and dysfunction is time taken away from life and sub-par even to death.
5 months ago | 7
That's a tough one... t's really hard to choose, because I can't know how I will be treated, cared for and feel when I'm sick and helpless. If there is good treatment and warmhearted care and no severe physical pain, I'd like to live as long as possible. But at the same time I'm scared of beeing left alone, having to suffer constant pain and beeing treated rude...
5 months ago | 3
I used to think do it all or at least keep my hydration and nutrition (leave room for God to work, as I say). Now that I am a couple of decades older and understand a lot more about end of life care, I am perfectly fine with letting me go.
5 months ago | 5
That depends on the situation I'm in. If I were in an accident and it were certain that I am paralyzed from the neck down, or that sort of thing, then no, let me pass. But if I have good chances for some quality of life, then they should try to keep my here. But under no circumstances do I want artificial nutrition.
5 months ago (edited) | 8
I would have a DNR in place so pretty much let nature take its course whatever happens. We do have legal euth*asia (did * as not sure if that’s a banned word) but it’s only for terminal illnesses. I’d be about quality of life but those options above are my only choices.
5 months ago | 1
I want to live for as long as I feel alive, not necesarily how long I can feel comfortable/uncomfortable
5 months ago | 2
I feel that MAID should be legal in all states. The person has a right to choose.
5 months ago | 3
so I think that humans can withstand a great deal of suffering, and that for some it might be preferable to stay alive as long as they can. but I've had two close family members pass away from cancer. for both of them, the very end was drawn out and torturous to witness, let alone to endure I imagine. so if I had a terminal illness, I'd look into ways to be able to choose when and how my life ends. but then again this would require me to be of a state of mind where I could make that decision, which I think would be really hard to pinpoint with something like dementia
5 months ago | 3
I view this decision based upon quality accessible resources for my care. With that in mind, quality of life is my choice.
5 months ago | 1
Personally i would want to be kept alive as long as possible, but i certainly understand the people that want something else.
5 months ago | 3
I’m not sure just how medical professionals can act in line with your wishes. I understand a DNR, but I don’t think you can have an advance MAID requests in Australia, if that is even something you’d consider. We don’t have it in Canada either. Even if you could make an advance request, it’s tricky to know how your future self would feel. I don’t know what the answer is because you have to be of sound mind to make such a decision. Let us know what you find out. I hope there is some way to honour your wishes. For me, quality of life would mean that I’m not agitated and aggressive or mean. If I’m smiling, pleasant, and happy to see people I’m probably feeling content.
5 months ago | 2
I require more context to answer. I don't think these choices are mutually exclusive. I feel an urge to launch into an essay, so I'll bite that urge back. But you've just determined my supper conversation. These are questions i grapple with. I'm looking forward to your discussion and reading the comments.
5 months ago | 1
Ultimately I believe people should have their own say, if or when the time comes to decide. It's an exceedingly difficult question to even ponder subjectively
5 months ago | 0
Hi Fraser, 1 of the things I love about your videos is that they prompt people to ask themselves the hard questions about life and death. Many years ago I trained as a Psychiatric nurse, I believe my training and the following years working in this profession have given me a broader understanding of our behaviours. I now work in aged care and have done so for the last 30 years. I have seen many changes in this area, some are good some certainly are not. So using my experience as a guide I certainly would choose Quality of life over living at any cost. Unfortunately there are no care facilities that are specific to younger people as yourself. There are no Hospice centers in Australia as you find in other countries which would be a much more suitable option than an Aged Care facility for end of life care. I find that rules and regulations don't allow aged care facilities to offer the same care ( medication for palliation) as a Palliative care team looking after someone in their own home has. There is assistance provided via some care agencies to provide some level of care at Home. I think when all is said and done if I can't swallow a good coffee or enjoy a lovely meal with my family whom I would still like to recognise then I would choose not to be part of this life anymore. Because when you can no longer interact with those you love what do you have. I really hope my view doesn't increase your anxiety for your future , it seems to me you're quite open to pondering these difficult questions. In another place I think I would have really enjoyed a long conversation , perhaps over a wine, contemplating the meaning of life with you Fraser. I wish you so much more time my friend . 🌹🌹
5 months ago | 2
I (don't) have dementia
Which of the following best describes you?
Note: In a future video, I will be talking about my preferences about medical treatment and end of life care. In the event that I am unable to communicate my wishes, making these preferences known, will help ensure medical/care professionals can act in line with my wishes. A key part of this is thinking through, what does "Quality of life" mean to me and under what situations would I not want to be kept alive. I would love to hear your thoughts on this, so please consider also commenting below.
5 months ago | [YT] | 82