End of life care – Part 3.

Rethinking dying

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I recently watched a TED talk by BJ Miller regarding how utterly unimaginative we are around dying He says that health care was designed around disease, while it should really have been designed around people. Thus dying, the ultimate crescendo of disease, has been caught up in institutions. He argues that we really should be re-thinking and re-imagining how, where and with whom we die. We need to bring intention and creativity, filled with beautiful moments, into this process. This is not an area in which scientists should lead the way. This is a field where there is room for the spiritual, the mavericks, the artists, the creators and the entrepreneurs.

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The world’s elderly population is growing rapidly in many parts of the world. The Americans already have a term for it: they say a “Silver Tsunami” will hit us. They are not wrong. people are living longer and those who should care for them are not able to as they are being forced to work harder and longer ( ironically to afford to live so long ) and doctors’ and pharmaceutical companies keep coming up with incredible new abilities and medications to keep fixing us up and going for longer..

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Death is often associated with ICU beds, amidst noise and bright lights, all alone. This way of dying is never on anyone’s wishlist. Dying in a hospital is almost always traumatic for everyone involved. We need to allow this process to be beautiful when it is possible. Our job should be to make it wonderful, not simply, less horrible. Our care should be adaptive. Let the lonely woman die with her cat. Let the rocker listen to Led Zepplin full blast on his way out. Let the painter die surrounded by colours. Let the mother die in the arms of her children. Let the gardener die around his plants, even if it is bad for the CO2 in the room.

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We know the physical changes a body makes before we die. We know that there will be a loss of appetite, excessive fatigue and increased sleeping, mental confusion and disorientation, laboured breathing, social withdrawal, decreased blood pressure, swelling of feet and hands, coolness of extremities and mottled veins to name a few. But whatever the symptoms, in the end we know the organs fail and our hearts stop .

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I have a dear friend, Dr AG Fuller – I often think he is going to realise one day that I am not clever enough to be his friend – but until that day comes, I will quote him. I asked him very seriously the other day what killed an acquaintance of ours. He said truthfully, and totally unexpectedly. “Her heart stopped. That is what is going to kill all of us eventually.” He is right, right?

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Until that day comes, when our hearts do stop, let’s make all the moments leading up to it full of wonder. Let death take us when it must, and let us not fade away from a lack of beauty, imagination or wonderment.

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This is a message I received after sending an email to check in on how a daughter of one of our EOL patients was doing that sums up our philosophy to end of life care and giving people the best and most beautiful experience we can manage, until the very end:

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“We all have such hope when a loved one has experienced an exposure to illness. We see the day when they will walk again in health and sunlight. Sadly, that is not always the outcome. Fortunately for us, my Mom had prepared herself, ensuring that when she left, it was in her light. You and your staff helped us through that time. The early morning sun rays, that solitary white rose on her chest and your compassion, made it a graceful moment for all parties involved. Forever I will thank you that I could save my Mom from a far worse end of life. She was surrounded by love.

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No wounds opened by your message. Just overwhelming gratitude.”

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