To Talk or Not to Talk About: End of Life, A Good Death Part 1

End of Life: A fish eye view photo of an island with sea and a small boat
End of Life: Fisheye view by Chris Scott

The time leading up to the end of life – after brain injury – or at any time, is a topic one should maybe leave alone.

I want to talk about it. I believe we should all talk about it. I know it is thought to be a private subject, yet what happens at the end of our life while very personal, is also universal.

We can easily forget end of life can happen at any age, not just old age. And one day it has to happen to all of us.  So why not talk about it.

I have always believed it needs to be talked about more openly and naturally. My own experience, early in 2014, when my father was dying made this even more important for me.

So here, and for the next 2 weeks I am sharing my own thoughts, and resources I have discovered. My hope is to encourage more natural and fear-less discussion about end of life and dying.

The next three weeks at Changed Lives New Journeys will talk about:

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  1. what lead me to talk more about end of life issues
  2. why I think it is important to consider this as early as possible
  3. and what might help to ensure our end of life wishes are met.

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My ‘End of Life’ Discussion Disclaimers

What I want to talk about here are the discussions and decisions that may potentially make our last days, and death, more comfortable.

This is not a discussion about ‘euthanasia’.

Some further clarifications about this discussion and the sensitivities around it:

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  • I am not one for euphemisms about dying – forgive me if my writing at times seems a bit blunt.
  • This is not an argument for, or against, Euthanasia; it is about ensuring the last days, weeks, and months are as close to our desired needs and wishes, and as comfortable as possible.
  • It is broader than people with brain injury. It relates to each of us: every single one of us.
  • It is broader than older people, it can happen at any age. It is never too early to think about your needs and wishes.
  • While legislation and rules will be different in each country and state, this is about general concerns, not legal aspects.
  • I am hoping to provide discussion points, and encouragement to talk. I am not providing legal recommendations.

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For more about the ethical issues that can arise around end of life and dying an earlier article Ethical Dilemma and Brain Injury includes an educational video about end of life issues Three Farewells: Medicine and End of Life Issues.

Picture of Learning.org website

 

5 Events That Led to Discussion About End of life and Brain Injury

A number of events clattering together lead me to think more about end of life.

The First Event

I was trying to get adequate pain relief for my father in the final week of his life. Despite a “Living Will” that stated he wanted to be kept comfortable even if this shortened his life. Dad was distressed and in pain, yet staff would not give pain relief as they were concerned it may also end his life.

Dad was semi-comatose, and dying within hours, or days at the most, after living with dementia for many years. I understood the staff reluctance, though at that time I could not support it.

My father had a legally certified “Living Will”. We discovered that while it seemed clear to Mum and Dad when they prepared it, it was not clear enough for his treating team: for example “Do not give me any treatment designed to prolong my life” was not clear enough when it came to providing pain relief that might, as a side effect, shorten life.

 

The Second Event

Talking with family, friends and colleagues there is confusion over how you record your wishes, and how instructions are interpreted:

What’s the use of a “living will” no one will take any notice. I will just tell my one of my children.”

“I belong to the Euthanasia society so my wishes are clear to everyone.”

“I have written up what I want to happen in my will”.

What we believe is clear may not be clear and available to everyone.

 

The Third Event

Three people close to me, in a short period of time, told me there was no need to record their wishes, or worry about end of life.  Each stated a close family member would take steps to end their life if need be.

In my experience this is a rare (and most often an illegal) act.

It may be an unfair burden to ask this of family and friends.

Even if family agreed in early times, when the time comes it is often too difficult.

 

The Fourth Event

A radio program I heard on “Life Matters” on the Australian channel Radio National had a panel discussing end of life and Advanced Health Directives. This reinforced the need to describe holistically and clearly what you do want. Not just what you do not want. Despite the Australian focus here I believe it has points that are useful for anyone thinking about end of life needs and wishes.

 

The Fifth Event

In contemplating the topic I recalled the many, many people over the years who have said to me

“I want to die peacefully at home with my family”

“I hope I die quietly in my sleep”.

Yet increasingly dying happens in a hospital, with treatments and interventions and unknown people around.

 

 

More Resources to Assist Discussion about End of Life and Dying

End of Life Photo of book cover Being MortalThis book ‘Being Mortal” came to my attention in an article as I was finishing this series. It sounds an interesting read but I have not had a chance as yet.

“Atul Gawande argues that an acceptance of mortality must lie at the center of the way we treat the dying. Using his experiences (and missteps) as a surgeon, comparing attitudes toward aging and death in the West and in India and drawing a powerful portrait of his father’s final years—a doctor who chose how he should go—Gawande has produced a work that is not only an extraordinary account of loss but one whose ideas are truly important. Questioning, profound and deeply moving, Being Mortal is a masterpiece.” Google Books

 

Encyclopedia of Death and Dying  – this site contains definitions and articles covering many topics relating to death and dying. Produced by Advameg Inc.

 

And Finally

Next week I will share more about Dr Sherwin Nuland’s wonderful book “How We Die”. Here is an introduction to Dr Nuland:  “TalkingStickTV – Dr. Sherwin Nuland – How We Die” This is a longer video than I would normally recommend but I find he has an easy conversational way and plainly shares his views.

His focus is more towards supporters, particularly medical professionals yet I feel there is something for everyone.

 

And Finally

Writing about end of life and dying brought to mind a quote written in 1690. It reminds me that there really is nothing new under the sun. Not even discussions about the end of life.

“With what strife and pains we come into the world we know not, but ‘tis commonly no easy matter to get out of it”. Sir Thomas Browne

The Works of Sir Thomas Browne: “A Letter To A Friend Upon Occasion Of The Death Of His Intimate Friend”. 1690

 

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