Shining a light on DonateLife Week
Article by Dr Kelly Lambert, Advanced Accredited Practicing Dietitian / Renal Dietitian
The referral was over 2 weeks old, it was nondescript to the point of being unhelpful.
The reason for the referral was not listed and the time was listed as routine.
In other words, get to it when you can, no rush.
It was 3:20 PM and the last day of my working week.
The patient was not known to me so I tried to get to get a history or some useful details from a colleague.
I was told “yeah…he can be difficult” and “he was cranky with me last time he was on the ward.”
I discuss the referral with the dialysis nurses to no avail.
The nurse who made the referral is not on shift and there is no documentation about it.
Another says in disbelief “HIM…You don’t need to see HIM!!”
There is nothing documented anywhere that gives me a clue.
Time is ticking.
I am on a tight schedule.
I need to sort this out then rush off to collect kids from childcare.
They fine you by the minute for being late you know.
I introduce myself to the patient, Mr G and discuss why I am here.
Apologetically almost, I confide that I am entirely unclear why I have been asked to see him.
I ask “do you know why they wanted me to see you?”
“No, I have seen your…type before…dietitians.”
I proceed “well can I just chat with you for a little while and maybe we will work out why. I am aware you have been in hospital recently. Can I ask you to tell me a little about that experience?”
With that one sentence, the barriers to talking have been removed.
“No one wants to talk about it with me” he says.
“It upsets my family too much….”
The patient, Mr G, describes how he almost died again, for the sixth time.
He describes the tribulations of the admission, the pain he still endures, that he has been told there is no cure and that his problems will recur.
I can see the disappointment and resignation when he tells me that he is not considered suitable for a transplant.
He weeps when he tells me that he cannot bear to tell his wife this.
While quietly wiping these tears from his eyes, he apologizes to me!
“I know I shouldn’t cry but it is tough you know?”
The dialysis nurse comes past to quieten a beeping alarm.
“Keep your arm STILL, these machines are very sensitive you know!”
Of course he knows.
He has been on this machine 3 days per week, every week, for years.
Mr G has suffered incredible setbacks through no fault of his own.
He is alive but only just.
We talk of his physical limitations that still linger from nearly dying again.
“I can’t even go to the shops with the wife to walk around anymore…and I used to be in the fire brigade you know, play football….”
It surprises me that this frail man who looks much older than he is, could have once been so vital.
He continues to talk.
Mr G describes the life he now lives.
“This dialysis is tough. I have missed my own son’s wedding” he says.
“Yeah, I was in hospital that time too, nearly died and then this last time, my wife was supposed to go to overseas and I got sick.”
“So, did she go?” I ask.
“I made her. No point staying home and wasting the money.”
I just cannot imagine how tough that would have been for them both.
We talk more, about the symptoms he has, the difficulties with eating and share a laugh.
I rustle up the courage but afraid of the answer.
“So, Mr G, after all you have been through, what are you looking forward to in life these days?”
This is part of our counselling training but it is a tough question to ask.
“Well, it’s complicated and it’s simple.”
“Ok, can you clarify a little more?” I ask.
“I want to get to 60.”
“And why is that?” I ask with curiosity.
“So…I can cash in my term deposit…roll it into my wife’s account and then call it quits.”
He says it just like that.
“Really? And how old are you now?”
“59 years, 8 months and 4 days.”
I am surprised.
Who knows their age so precisely?
I guess any person who is ticking down the time.
“You know, I’ve tried to discuss this with my wife, my sons, and my doctors. They all say don’t give up. I’m not giving up. It’s different.”
He does not need to say anymore because I understand.
He wants to stop dialysis on his terms, die on his terms, in control for once.
“I admire you Mr G” I say.
And I do.
“After all you have been through, you are still putting other people before you.”
He quietly weeps again.
“I am such a burden on my wife” he says.
What do I say?
What can I offer to ease this sadness?
The conversation pauses again, a blood pressure check or something.
So routine that no one says anything.
It is understood and we comply.
I continue “well Mr G, this is what I can help you with. What about we work together to help you get to 60. I can work with you to get some strength back.”
Mr G is malnourished.
Underneath his thick jumper and pants he weighs less than me.
“That sounds great” and we put together a plan.
On the way back to my office, late again to pick up my kids from school, I am still thinking about Mr G.
I will miss him when he decides to stop but will be glad he got to have the last laugh at his own body.
I wonder what I might do in his situation when your body has let you down.
Though late to pick up my kids again—I will not apologize.
Some conversations are difficult and you cannot hurry them.
Some conversations you do not need to talk, just listen.
Some conversations matter more than others.
About the author
DonateLife Week is 28 July to 4 August 2019.
For more information visit, donatelife.gov.au.
This article first appeared in Hemodialysis International February 2019. The original title was Difficult Conversations.
Top photo by Simon Bradfield.