Tag Archives: patient autonomy

I think therefore I am? – It’s down to you now, you wanna be free?*

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*From Cliff Richard’s We don’t talk anymore: https://www.musixmatch.com/lyrics/Cliff-Richard/We-Don-t-Talk-Anymore-1987-Digital-Remaster

Photo by billow926 on Unsplash

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.

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Bedside Lessons – 6. Week Two – A hard promise to keep

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Photo by Oliver Roos on Unsplash

A week later and I had to keep my promise, to prove that they were not just empty words.

Thursday

I’m sorry that things are changing so quickly, that you are losing even more control.

Groan.

The reason that you have been vomiting is that the cancer has caused a blockage in your guts, it’s really bad.

Is it going to get better?

We can try a medication which might dry up the vomiting, but I don’t think the blockage will clear. This is a dangerous situation, you probably won’t recover from this.

Could you decrease the pain relief? It’s making me too sleepy. I want to be awake for my son.

Okay, but if your pain gets bad, we might have to go up again.

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Bedside Lessons – 5. Week One – Here’s the deal

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Photo by David Cain on Unsplash

Thursday

I want you to be really honest with me, has the pain relief worked?

Yeah, I think it has, I’m moving better. I had four hours of sleep last night which is pretty good for me.

I’d like to increase your pain relief from 25 to 35.

Could we make it 30? I don’t want to be too sleepy.

Okay sure. If you disagree with my plan you let me know and we’ll change it. I will be guided by what you want or don’t want. That’s a sweet tattoo on your arm, is that your son?

Yeah, he was a cute baby. I became a dad when I was 20. My son will be five in two months, I hope that I’ll be able to see him start school.

Friday

Hey I saw you walking around before, how you doing?

Good man. I had the best sleep in the last two years. No pain.

Really?

Yeah, I feel good.

That’s great, if this keeps up we can start talking about going home soon.

It’s Fathers’ Day on Sunday.

Yeah, that’s right, we’ll see how you go, if you are still good, we’ll aim for home Sunday.

Monday

I just wanted to say see ya later.

Thanks man, for everything.

My pleasure bro, I wish you well.

[Fist Bump] [Smile with eyes, with mask on emoji]

Lessons learnt:

It is important to be honest with your patients, as you need to build their trust in you.

Allowing patients to share in decision making helps to empower them. Give them back some control, in an illness situation in which so much control has been stolen from them.

Make it clear that they can disagree with any of your treatment plans, and that you will listen to them and that within reason you will adjust appropriately according to their wishes.

Say what you mean, then do what you say.

Bedside Lessons – 4. The Father

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Photo by Tim Mossholder on Unsplash

The old Chinese man was admitted with uncontrolled pain and breathing distress. His wife and son doted upon him and were worried about him as he had been rapidly worsening over the past weeks. He had previously had fluid from around his lung drained in hospital the other month, which had helped his breathing. His symptoms were controlled quickly but he still felt exhausted.

Even speaking to him in his native Mandarin Chinese it was difficult to tell what he really wanted. He appeared to know that things were worsening. It was just before New Zealand’s general election, and the End of Life Choice Act 2019 was being considered for enactment via National Referendum. He told me that he had already cast his vote and was in support of having the option of assisted dying. His son quickly told him that even if it was voted in that it could not be accessed until another 12 months.

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Bedside Lessons – 1. The Magyar

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Photo by Chandler Cruttenden on Unsplash

When we met, I had just started my second year of specialist training in Palliative Medicine. I was keen to use my new-found skills and knowledge in the hospice inpatient setting. When I assessed him I was sure that I could successfully treat his pain and that I could decrease his suffering. Management plans swirled in my head and I started to offer him strong analgesics in order to cover his severe pain. I talked to him in an excited manner about Morphine, Oxycodone, Methadone, Gabapentin, Nortriptyline, Fentanyl. He was not interested and would only take Paracetamol. Hmm, maybe we’ll try again tomorrow.

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