A Good Death: End of Life and Dying Part 2

End of life and dying. Close up photo of  a wave breaking with  sun behind
End of Life and Dying Image by Chris Scott

Why is it important to talk more freely about end of life and dying?

Most of us hope for a “good death” when the time comes – but what is it?

Last week I talked about what lead me to this discussion of end of life and dying and why it is important to talk more openly about end of life and dying. Today, I want to talk more about why it is important to consider and discuss our needs for our end of life and dying – before it happens.

 

Why Talk About Dying and End of Life?

It Is Inevitable

A very cliched statement; I don’t know what else to do except repeat it “death is inevitable”. It’s a part of life, yet it is a part of life we often seem reluctant to discuss.

It is important to talk about for ourselves, for those we care about, and those we have responsibility for.

 

It Can Promote ‘A Good Death’

Throughout my early nursing career I was interested in the different ways people faced their end of life. There were those who had a stress filled time either physically, emotionally, spiritually or psychologically. Sometimes a combination. A difficult time for everyone involved.

Then there were those that had what might be described as a “good death”. Peaceful, wishes fulfilled and an amazing experience to witness. These were often people who had talked about dying with those around them, who had expressed their wishes for what they wished to happen.

 

It Is A Part Of Life

Another cliche ‘Death is a part of life’. Yet we hide it away. It is a subject we just don’t want to go near.

This is why I want to talk about it, however icky the subject seems. Our aim should be that as a natural part of life we want a “good death” and end of life for everyone.

 

This TED Talk by Peter Saul “Let’s Talk About Dying” gives insights into why we should talk more about end of life and dying. He has an interesting description of an “occupy” movement of dying!

 

End of Life and Dying: What Makes A Good Death

As I was thinking about all this I recalled a wonderful book “How We Die” by Dr Sherwin B Nuland. I am using this book as a major source of information here, including the quote below. I highly recommend it, whether or not you who want to to consider dying and end of life more deeply. There was a talk by Dr Nuland in last weeks article To Talk Or Not To Talk About: End of life Part 1 

“… the recognition that the REAL event taking place at the end of our life is our death, not the attempts to prevent it.” Pg 256

 

End of Life and Dying Photo of multicoloured bunches of flowers
Image from Jessica Gale MorgueFile

 

Here is a summary of what I believe a good death is. What I would like for myself and for those close to me:

If we think first about how we want our end of life and dying to be like, we can then build strategies to help this happen.

To be comfortable and pain free:

Physically at ease through medication or other therapies

Psychologically / spiritually and emotionally at ease by having needs met and issues resolved.

Carefully considered medical or other interventions. Ideally only those necessary for comfort and pain relief.

 

To be free from stress:

Surroundings conducive to a comfortable, peaceful end of life and dying. This will differ from person to person. Most often it includes being in a familiar place.

A lack of conflict between the person and others. And between those around the person.

 

Freedom and space to say what you need, and want to say

To be able to talk about your life.

To be able to say what you wish to others. Dr Ira Byock in The 4 Things That Matter Most –  includes four messages that matter most. People want to say:

[unordered_list style=”green-dot”]

  • Please forgive me
  • I forgive you
  • Thankyou
  • I love you

[/unordered_list]

 

To have your wishes adhered to:

A quiet space, or social space, as is your wish

Alone or with others of your choice

To have the treatments (or not) that you wish as much as possible

 

To live out your life as you would wish:

To have the assistance needed to complete final tasks you might wish to. A friend wanted to see her daughter married before she died. They brought the wedding date forward so this could happen.

Celebrate your life – a short video by Dr Ira Byock  explains ‘Celebrating People Out of Life’ in more detail

This focus is on the person who is dying. Family too should be able to feel they have been a part of a good death.

What other factors do you believe contributes to a good death, and end of life?

What Can Make the End of Life and Dying Difficult?

End of life and dying Photo of stormy sky with sailing ship in background and churning waves
Image from Pixabay

Sometimes at the end of life our wish to die peacefully is thwarted. This can happen for a number of reasons including those below. I include excerpts from “How We Die” by Dr Sherwin Nuland.

Pain and Discomfort

Physical pain

Emotional or psychological responses such as fear, anger.

Social or emotional stress such as having unfinished tasks or not feeling complete.

Spiritual pain – questioning own beliefs or trying to find a belief system and meaning

Family or relationship stress. Family may not be able to let go of the person. There may be tension or conflict between family.

Discrepancy between what family and the person might want. Contrary to the person’s wishes the family might wish for life to be maintained at all costs.

Discrepancy between what the person wishes and their Doctor or treating team are compelled to do.

 

Dr Nuland recalled an older woman he had treated who wished to die peacefully without further treatment “… Instead she suffered the fate of so many of today’s hospitalised dying, which is to be separated from reality by the very biotechnology and professional standards that are meant to return people to a meaningful life.” “…. Deprived of the tranquillity we have every right to hope for.” Pg 254

 

Family and / or the person putting their unquestioning trust in treating professionals because they do not have the knowledge for this phase of life.

“The good death has increasingly become a myth. Actually, it has always been for the most part a myth, but never nearly as much as today. The chief ingredient of the myth is the longed-for ideal of “death with dignity.”

 

The Doctor’s own desire and their training to save and protect life.

“Too often, patients and their families cherish expectations that cannot be met, with the result that death is made all the more difficult by frustration and disappointment with the performance of a medical community that may be able to do no better – or, worse yet, does not better because it continues to fight long after defeat has become inevitable. In the anticipation that the great majority of people die peacefully in any event, treatment decisions are sometimes made near the end of life that propel a dying person willy-nilly into a series of worsening miseries from which there is no extrication – surgery of questionable benefit and high complication rate, chemotherapy with severe side effects and uncertain response, and prolonged periods of intensive care beyond the point of futility. Better to know what dying is like, and better to make choices that are most likely to avert the worst of it. What cannot be averted can usually at least be mitigated.” Pg 142-143

 

Lack of Honesty

This is not usually a deliberate act, more  a desire to protect. I remember in my early nursing days it was common for orders to be recorded that the person was not to be told they were dying. This would be either because the Doctor, or the family had deemed it in the best interests of the person dying.

This 2014 TEDtalk “Am I dying? The honest answer” by Paramedic, Matthew O’Reilly is more about sudden / emergency situations but it gives a wonderful insight into one person’s journey and gives us insights to think about in discussions with people who are dying.

 

 Further Resources About End of Life and Dying

End of Life Photo of book cover How We Die‘How We Die’ by Sherwin B. Nuland, as I have already suggested. An excellent book. It is the book I have quoted from throughout the above article.

“Attempting to demythologize the process of dying, Nuland explores how we shall die, each of us in a way that will be unique. Through particular stories of dying–of patients, and of his own family–he examines the seven most common roads to death: old age, cancer, AIDS, Alzheimer’s, accidents, heart disease, and strokes, revealing the facets of death’s multiplicity.” Google Books

 

The Conversation provides links to a number of articles on “Talking About Death and Dying” . The Conversation is “a collaboration between editors and academics to provide informed news analysis and commentary that’s free to read and republish.”

 

end of life photo of book cover Broken Connections

I have not read this book however I have read others by Robert Jay Lifton. His writing and life experiences are challenging and enlightening.  While maybe not strictly on the topic it will likely be a fascinating read.

“In The Broken Connection, Robert Jay Lifton, one of America’s foremost thinkers and preeminent psychiatrists, explores the inescapable connections between death and life, the psychiatric disorders that arise from these connections, and the advent of the nuclear age which has jeopardized any attempts to ensure the perpetuation of the self beyond death.” Google Books

 

 

 Please share any resources you have found useful in the comments below.

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