Lesley Goodburn - How to initiate difficult conversations or Time as an Emotion at End of
Life
My name is Lesley Goodburn and I was asked to give a patient carer perspective on how to
initiate difficult conversations
So I thought I would start with the word initiate …..When I looked it up in the dictionary it
says to cause a process or action to begin.
As a person in my day to day life I rarely initiate a conversation …. I always have a
conversation with a person ….. As one person to another.
So if I needed to talk to someone about my loved one as a carer especially at end of life ….. I
wouldn’t want to talk to someone who thought that they had to “cause a process or action
to begin.”
I would want to talk to a human being….. Who might have the empathy to consider how I
might be feeling.
Then if you focus on the word difficult….. Which is characterised as causing hardship or
problems …..Why would you presuppose that your conversation is going to be “difficult”?
….. It may well be an outlet especially for a carer or a family member … a chance to open up
a conversation and be honest about the situation that the family is facing.
So to ” initiate a difficult conversation” is “to cause a process or an action to begin that
might cause hardship or problems”
Thinking about language is very important ….
“Initiating a difficult conversation” from a patient’s perspective is much harder for me to
talk about….. As currently I know like everyone else…. I am moving closer to the point that I
will die. But thankfully for now I have not received a diagnosis that suggests my demise is
imminent. I imagine that if I was in that position having received a terminal diagnosis I
would still have the same perspective as I do as carer….. But who knows how that might
change when you know that time is short for you.
I really do not feel that I can talk about “initiating difficult conversations”
What I am able to talk about are feelings….. Love….. Compassion….. And empathy at end of
life from both a patient and a carer perspective.
I can talk about the sheer terror of losing the person who is your soul mate …..Your best
friend …..The love of your life …..Your adorable husband… about how that makes you feel…..
How your emotions are heightened …… how at that point in time you remember things that
people say ……. and how they make you feel.
I can say this as in May 2014 my husband Seth was diagnosed with pancreatic cancer and he
died just 33 short and heart-breaking days later.
Seth’s difficult conversation happened the day after he was admitted to A and E….. It
happened when Seth was alone without me to support him ……it happened in the two hours
between afternoon and evening visiting time.
It happened sometime between when I left to go home at 4pm and when I came back at
6pm.
Seth who had received this devastating “difficult” news…..then had the additional burden of
initiating the most “difficult” impossible….. inconceivable conversation with me… where he
had to explain that he had been diagnosed with terminal late stage pancreatic cancer and
that he had days or at best weeks to live.
I was terrified…… terrified of losing my adorable Seth….. Terrified of him being in pain…..
Terrified of the watching him die…...and not being able to make things better or
right…..Terrified of the future … one without Seth.
Three days after the consultant having the “difficult” conversation with Seth and the same
three days after which Seth had his “difficult” conversation with me……we both finally got to
have time with the consultant.
We were in a six bedded ward …. The consultant came to us and pulled the “soundproof”
curtains around us….. He explained the diagnosis in all its heart-breaking …..Foreboding…..
Insidious detail. The consultant did that in the most compassionate… empathic and human
way that he could…. he held my hand and touched Seth’s arm….. He stooped down to our
seated level and eventually sat cross legged on the floor of the ward.
He was a truly kind…..compassionate man he did everything he could to soften the blow….
but those “sound proof” curtains didn’t stop the other five patients and their families
hearing our most personal details and questions.
Over the next few days we were subjected to the experience five more times but this was
from the other side of the “sound proof” curtains.
Our next 10 days back at home were characterised with many “difficult conversations” with
family, friends and people who were there to help us … professional people who were going
about their business, GPs, district nurses, palliative care nurses, hospice, secretaries,
oncologists ……. who without fail seemed to cause a “process or an action to happen” which
invariably caused “hardship or problems” for me and for Seth
Today I am here sharing Seth’s and my experience … its just 20 minutes in one day... a day
that is so important… but then every day is important ….
But what is a day? We talk about days all the time
•
Our day will come
•
One day at a time
•
Day by day
•
What a difference a day makes
Days are made up of hours……..hours are made up of minutes…. minutes are made up of
seconds……. Seconds which tick away?
Time…… Seconds….. Minutes…. Hours… Days…. we often don’t pay much attention.
There are life changing events when time becomes very much more important……. Days…..
Hours…. Minutes….Seconds…….. Ever more precious.
Especially when you know the love of your life has very few days left to live……… but you
don’t know how many.
When this happens you need to be supported……..you want the best possible for your loved
one…. you want to be with people who understand…..you need care……. compassion…..
Empathy …..A connection to the humanity that everyone possesses.
At end of life there is only one chance to get things right……… time ceases to be a concept
…….it becomes a raw and precious emotion.
Emotions connect us ……….. They make us human. ……It’s about the understanding of a
person or families suffering……. the desire to help….. Or in other words compassion.
For 33 short and heart-breaking days in May 2014….. I experienced the deafening sound of
the seconds tick away……….minutes raced too quickly into hours…… hours become a series
of emotions…. emotions through which I had to fight and struggle….. The hours allowed our
precious days to disappear all too quickly
So please be aware as you go back to your day job that time is an emotion…..especially for
those people who are facing the end of their lives….. And their families too experience time
as an emotion….. This is because their life is forever changed by “initiation of a difficult
conversation.”
So next time you need to talk to someone about the end of their life or that of a loved one …
about choice….options…. goals…. think about having a compassionate conversation with
them ….don’t initiate…… just talk… don’t think its “difficult” …. Just do it….. It may be
“difficult” for you….. But you may find it’s a relief for the people who are affected…. Or it
may the end of their world.
Also remember that each person circumstances are unique….. the “difficult” conversations
may have started years before as part of a treatment plan ……your “difficult” conversation
may take someone on a split second journey from being unwell…..to dying….. Your
“difficult” conversation may be a release for the person you are talking to.
A few weeks ago on a patient walkthrough at local hospital I visited to the mortuary to see
the beautiful room where people came to see their loved ones after they had died.
The hospital and staff referred to the room as the viewing room where you could go to view
your loved one.
I reflected on this and thought why you visit someone when they are alive…… and view
them when they are dead so I tweeted this thought.
Yesterday when I got home a had a note from a nurse saying that that they had reviewed
their bereavement support pack and that they now they invited families and carers to visit
their loved one……so 140 characters in the ether can make real change happen….. You need
to make similar changes so that in the future there are no more “initiated difficult
conversations”
Words create an emotional attachment … a connection… choose them wisely…. remember
visit versus view….. Remember that time is an emotion…
Today I haven’t talked about “initiating a difficult conversation” I have talked about
connection… love… empathy …… compassion.
Remember that time is an emotion for us all… but at end of life… time and emotion are
heightened…..the emotion and memory stays with those left behind for ever.