*From Cliff Richard’s We don’t talk anymore: https://www.musixmatch.com/lyrics/Cliff-Richard/We-Don-t-Talk-Anymore-1987-Digital-Remaster
In Aotearoa/New Zealand the End of Life Choice Act 2019 will be enacted into law on Sunday 7th November 2021. Written in the voice of someone who is considering accessing assisted dying is a further conversation that they might have with NZ Hospice/Palliative Care, if only they would deign to listen.
The last time we talked I was not at my best, I was angry, upset and scared. I’ve had time to reflect and have looked at things from some other viewpoints. This is not an apology because I need you to see me as I am, I don’t want to have to pretend in front of you. I need you to understand how I feel, and what I am going through.
Thank you for not running away, like the others did. You said that you have similarly emotionally intense conversations all of the time, and that you have been trained to be able to handle them. You certainly used it to take the opportunity to get to know me better, and to explore my fears.
That being said, I shouldn’t have sworn at you, that is not me. I am usually much better at controlling myself. My anger was not just directed at you, I’ve been through many frustrating interactions during this illness journey, and it all just exploded the last time we met.
I don’t know how you can continue doing your job, having to have conversations like this, I couldn’t do it. You said that self-care is an important part of your practice, I hope for your sake that you meant it.
I am desperate to be myself, to hold onto what’s left of myself. Being really unwell for the first time in my life has been terrifying, as I said the other day, I don’t feel in control any more.
This is what I need you to know in order to care for me:
I am not stupid, please do not treat me like a child.
I was not born yesterday, but I might die tomorrow.
I feel sad, but I am not depressed or crazy.
I am trying to be as rational as possible and have considered my limited options over and over again.
You say that you’re going to be there for me and my loved ones until the very end. I need to be convinced that you are telling me the truth.
I’m not dead yet and still need human to human connection, if you disconnect from me, you will not be able to help me.
Like the majority of your patients, I don’t want to die, but I know that I am dying much sooner than most people are. Some days I can accept it, on other days I wish I could wake up from this nightmare.
You say that I am experiencing existential distress and I think you are right, as my very existence is at risk. My sense of personal wholeness is falling apart, parts of me having died already. I have been robbed of my future, I had so many plans.
If I have to leave early, I want it to be on my own terms, even if it means I choose assisted dying. Just remember, no matter what happens I am dying anyway, and there is nothing that medicine can do to stop me from dying.
Even the alternatives that I thought I would never try have not worked. I am so frightened of my loved ones seeing me suffer and my not being able to look after them through their suffering, if I am too unwell.
My partner and I have discussed this thoroughly including, “If the situations were reversed, what would you want? Would you be able to respect my wishes?”
You might not agree with or like the choices that I make but it validates me as a person when you respect that it is my right to make them. If you can’t do that then you’d better get out of my way.
The opposite of love is not hate, it is actually indifference. I need to be shown that you care, not that your personal beliefs are more important than my suffering.
I don’t want to be caught in the crossfire of other people’s personal ideological battles, I just don’t have time for it.
I don’t want you to argue, I need you to listen to me, I need you to learn from me.
If we are going to be working together I don’t want there to be any surprises between us.
I need you to bring your best professional self each time you show up.
Can you do that?