One Chance To Do It Well! Our End of Life a Good Death – Part 3

End of life and a good death. Picture of sunlight through tree branches
End of Life and a good death. Image by Chris Scott

Can we help to make our end of life a good death for ourselves and for others?

What tips and strategies might contribute to having our needs and wishes met? To make our end of life a good death.

The first article in this series To Talk or Not To Talk About: End of Life A Good Death   describes a number of issues that lead me to this discussion about end of life a good death. The second article A Good Death: End of Life and Dying contains thoughts about why it is important to consider and discuss our needs beforehand.

I remember many years ago in a local hospital a young husband and wife, both of whom were dying from terminal illnesses. Both had been, and continued to be rebellious and forthright. Many hospital staff were unable to cope. The couple challenged others owing to their black humour – jokes about who would die first; their insistence on wearing brief black clothing as they whizzed around the hospital in their wheelchairs. And at a time when there were strict male and female wards they insisted on a shared room.

All this at a time when hospitals were very conservative, rule run, places.

“Anna” told me she and her husband “Ben” had talked extensively about how they wanted their end of life to be. They were determinedly living out their wishes. They were not happy about dying in their early 20’s but were happy with the choices they had made for a “good death”. For them this included continuing to lead their rebellious (end of) life,  sharing as much as they could, and loving each other in their own way.

 

As a young nurse Anna and Ben had a profound impact on my thinking.  Here now are strategies gathered from my own experiences over the years since meeting Anna and Ben, and from research. This is an introduction. It is not a complete list. Please add further tips and strategies in the Comments below.

I recommend this personal story of Jenny to illustrate a little of what a “good death” means:  The Beautiful Death of Jenny shared on The Order of the Good Death. Similar to Anna and Ben, Jenny and her husband Pete Groat created a “good death”.

[button link=”http://www.orderofthegooddeath.com/the-beautiful-death-of-jenny#.VOkryfmUeSo” color=”silver” text=”dark” window=”yes”] The Beautiful Death of Jenny[/button]

 

End of Life a Good Death  Multi-coloured Cartoon drawing of a pencil
Image from Pixabay

How To Do It Well – Tips and Strategies to Help Make Our End of Life A Good Death

Some starting points for thinking about what you can do to ensure you make your own, or others end of life as comfortable and according to their needs and wishes as possible:

Start Early

Yes dying is going to happen to every single one of us.  No we do not know when.

Get ahead! You are never too young to start thinking about it.

Work on getting yourself and those around you comfortable with thinking and talking about this, a natural stage of life.

 

It can be helpful to discuss your needs and wishes with others, particularly those close to you. Remember not everyone will be comfortable doing this you might need to find the right people or work on the one’s important to you.

 

Explore. Be open. Be Fearless

“Anna” and  “Ben” taught me much about being fearless in the face of death. About not being afraid to talk about it, to ask questions, to think about it, to ask for what you want.

Imagine if we talked about dying the way we talked about other life stages – adolescence for instance – how much more would we share, learn, face up to, and do about it.

“The belief in the probability of death with dignity is our, and society’s, attempt to deal with the reality of what is all too frequently a series of destructive events that involve by their very nature the disintegration of the dying person’s humanity. I have not often seen much dignity in the process by which we die… Only by a frank discussion of the very details of dying can we best deal with those aspects that frighten us the most. It is by knowing the truth and being prepared for it that we rid ourselves of that fear of the terra incognita of death that leads to self-deception and disillusions.”   (” How We Die” Dr Sherwin Nuland)

 

Think Deeply About What You Do Want – As Well As What You Don’t Want

Begin to gather ideas for what you want, and do not want, your life to be.

Learn from other’s experiences, look around, ask people, check out the resources at the end of this article.

Talk with family and those close to you about how you want to live your life AND the end of your life. What do you want to happen? Who? How? When? Where?       What you do not want to happen?

What is reasonable; legal; achievable; what alternatives might need to be considered.

If everyone is on the same page they can better interpret what you might want – even if you are unable to express this. You could use the list in last weeks article  A Good Death: End of Life and Dying to provide some useful discussion points.

Most of us have given thought to, and know what we want – share this openly. For instance almost every person I recall speaking to about dying stated they wished to die in their home in their own bed – if that is your wish that is a good starting point.

Remember through all of this thinking and planning that when the time comes it is OK to change your mind about what you want.

 

If Belief is Important it is Important

Sometimes we think we have spiritual beliefs and something happens to us and we find we do not believe anymore. It is OK.

Sometimes we think we do not have spiritual beliefs and something happens to us and we find we do.  It is OK.

It is important to acknowledge and allow a person to follow the meaning and belief system they wish to follow. If it is their wish, ensure the person dying is able to follow their own belief system.

A person may also wish to acknowledge and review the life they have lived. They may choose to talk with family and others, to write or record their life.

 

Sort out the Rubbish!

Sorry that is indelicate – politely what I mean is – sort out issues that can, or do cause pain, discomfort, or hang around in your mind.

Work on addressing any form of pain: physical, spiritual, emotional, psychological particularly if end of life is imminent.

Complete any outstanding tasks possible that get in the way. It might be a need to settle financial or legal matters.

If it is possible resolve any outstanding personal issues or conflicts. It is a common story that we come together and resolve feuds and issues at the end of life. Not always but commonly.

 

 Get Your Affairs In Order Ahead of Time

No, I don’t mean the elicit kind – I mean your legal and financial affairs:

If possible – try to understand and sort out legal and financial issues before a crisis occurs, before the time a person is no longer able to make a decision.

Review regularly to make sure legal and financial documents continue to comply with your needs, wishes and situation.

 

Research What Your Options Are For Legally And Medically Expressing Your Wishes

Research the possible forms and legality of a “living will”, “advanced health care directive” or whatever it might be called in your area. Even if not legally binding it can be very useful to have your wishes recorded. This can also form a basis for discussion with those close to you.

“The solitary death is now so well recognized that our society has organized against it, and well we should. From the wisdom of the legal documents called advance directives to the questionable philosophies of suicide societies, a range of options exits, and at bottom the goal of each of them is the same: a restoration of certaintly that when the end is near, there will be at least this source of hope – that our last moments will be guided not by the bioengineers but by those who know who we are.” (Pg 255  How We Die” Dr Sherwin Nuland)

 

Engage in careful, informed examination, and consideration of any intervention.

Seek  the opinions of Doctors and other Health Professions but remember it is your life -and death.

Discuss options and work with Doctors and treating professionals to gather knowledge and form your own view.

It may be necessary to engage an informed advocate to help you.

“Mine is not the first voice to suggest that as patients, as families, and even as doctors, we need to find hope in other ways, more realistic ways, than in the pursuit of elusive and danger-filled cures.” (Pg 233 How We Die” Dr Sherwin Nuland)

 

Blaming is easy but not helpful – before, during or after death.

Blaming commonly happens during stressful times often:

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  • about Doctors and treatment given (or not given);
  • family members believe other family members are not doing enough;
  • family members or others thought to be taking advantage
  • guilt.

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Avoid blaming others, and avoid encouraging or supporting others in blaming.

Disagreement and different views will naturally happen -work to resolve this without blaming if you can.

“keep discussing the importance of airing different viewpoints rests not in the probability that a stable concensus will ever reached but in the recognition that it will not” (Pg 157 How We Die” Dr Sherwin Nuland)

 

Memory Lane – enable a replay of life

Enabling a review of our desire to Live, Love, Learn, Leave a Legacy: as Stephen Covey suggests –

This might include;

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  • Reviewing life and achievements
  • Remembering the people who have been important
  • Helping to resolve issues
  • Clarifying wishes
  • Finding meaning if that is their focus.

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How this is done will vary from person to person. It should be a personal choice and fit with the capabilities of the person. It might include writing, oral history, recording.

Seek Out Organisation and Individuals Who Can Help

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  • Local associations
  • Early discussions with family and local Doctor
  • Spiritual or life mentor
  • Palliative care team (if involved)[/unordered_list]
Photograph of statue of cherub angel in garden setting
End of Life and Dying. Image Pixabay

 

Gather Good Support Around

For those supporting others through their end of life and dying there is a description Dr Sherwin Nuland gives at the end of his  Talking Stick talk , provided in the first article of this series lTo Talk About It or Not To Talk About It. (At approximately 1.00hr to 1.06hr) he lists key support mechanisms:

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  • accompanying people on their journey.
  • talking about their wishes as early as possible.
  • recognising that dying is not a medical condition but a part of life. The role of supporters, including medical staff, is  to nuture and care.

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Further Resources About Making End of Life A Good Death

For further reading The Order of the Good Death lists a range of books about many aspects of death and dying.  “AT LAST! YOUR DEATH ACCEPTANCE READING LIST” seems a very appropriate way to conclude this series on end of life and death. Providing you with more resources should you be interested.

The article is introduced by Caitlin Doughty thus:

“Bless their morbid souls, Order members Bess Lovejoy (author of Rest in Pieces: The Curious Fates of Famous Corpses) and Megan Rosenbloom (co-founder of Death Salon) put together a list of deathy books for all manner of death interests.”

Please share your comments on any of the three articles. It is a difficult topic. These articles have been sitting for almost a year while I contemplated whether or not I should talk about death and dying.

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