I think therefore I am? – Clarification

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The following are my own personal professional views and do not represent those of my employer or of Palliverse in general.

I’m not interested in debating the pros and cons of assisted dying, everyone is entitled to their own opinions. In Nov 2020, 82% of eligible voters voted in the referendum, 65% of the voters supported the End Of Life Choice Act 2019. Aotearoa/NZ clearly stated it’s opinion last year, and in two days’ time it will become law.

I do not want my patients to be caught in the middle of two warring ideologies.

I am not here to argue, I am here to listen to my patient, I am here to learn from them. They are the expert when it comes to what they are going through and their suffering is defined by them, not by me.

I think that we in Hospice/Palliative Care need to build a bridge and get over ourselves. Our focus should be on our patients, not on ourselves.

Please treat patients with respect, they weren’t born yesterday, but they might die tomorrow.

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Introducing Bedside Lessons – What isn’t done, isn’t done.

Photo by noosha ghodsizad on Unsplash

It’s ironic that I am writing on a daily basis now when I barely paid attention in English classes and did not even do English in my last year at high school. I had a bad attitude back then and scoffed at having to read Hamlet, 1984 and Brave New World, choosing instead to read Alan Moore and Dave Gibbons’ Watchmen. Interesting that I can still remember all four books 31 years later.

The same applies to behavioural science lectures during medical school, I didn’t realise that upon graduation that a lot of the psycho-social-spiritual-cultural stuff covered in those lectures would be much more important in my day to day work life than the physical stuff. My training was in the traditional biomedical reductionist style. Medical school takes a young tree hungry for growth and knowledge and whittles it down to a sharp but prickly toothpick, with an ego the size of a man-made forest developed along the way.

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

*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

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

Im 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

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

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 – 2a. The Grandma

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“Are you going to help me, or are you going to keep blocking me?”

She had spent weeks on our ward with pain in her upper right abdomen. This was caused by metastatic cancer deposits in her liver. Previously the metastases had caused blockage of bile ducts leading to painful jaundice, this had been treated with insertion of drains.
She talked with fondness about her children, but when it came to discussing her grandchildren that was when her eyes sparkled. It was good to see her comfortable and talking in a happy fashion. A pleasing contrast to when she had first been admitted, doubled over and grimacing in pain, despite having taken maximal pain relief at home. It had been good to ease her suffering with the care that we provided.

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Bedside Lessons – 1. The Magyar

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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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First Person: The therapeutic value of touch

photo by Jonas Vincent via unsplash.comThe first time one of my medical professionals touched me for comfort rather than during a physical exam, it was during my liver biopsy.  I was extremely frightened of the procedure, due to how painful I’d been warned the procedure was, and I was, and still am, slightly uncomfortable with needles (though daily Clexane shots sure sorts that out fast).  The medical team at the imaging clinic I attended had gotten in a second nurse, just to hold my hand during the procedure.  It was her 60th birthday, and she had been called in, literally, just to hold my hand.  I was incredibly moved by this, and incredibly comforted to have someone gently talk me through what was going on – to warn me to look away when the giant liver biopsy needle was brought out, helping me count holding my breath as the needle drew up the cancerous cells, and gently walking me to the recovery room after the procedure finished. It was one of the kindest things I have experienced with my medical professionals – and I have experienced more kindness than I can even recognise. Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

This week’s reading list features stories from around the globe.

Telehealth helps to facilitate home-based palliative care in Taiwan, in one of a series of EAPC blogposts about palliative care in SE Asia (Cloud-based platform for palliative care at home)

Tailored care for older patients with cancer in Latin America: an imminent challenge (British Geriatrics Society blog)

“Although it is unrealistic to believe that someday every older adult with cancer will be treated by a geriatric oncologist, we should make every effort to offer geriatric training to all healthcare professionals and to create bridges between geriatrics and other medical specialties.”

Health advocate and heart attack survivor Carolyn Thomas on the physiological and emotional response to the fear of dying during a heart attack. Continue reading