Category Archives: Ideas

I think therefore I am? – It’s so funny how we don’t talk anymore

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St Joseph’s Hospice was founded in 1967 by Cicely Saunders in order to help cancer patients for whom medicine had nothing else to offer. Often these patients would suffer from the effects of their illnesses and died in miserable circumstances which were distressing to both patients and their families. Over the next decades hospice/palliative care services developed all over the world, and practitioners pride themselves on being patient-centric. Hospice/palliative care staff value their communication skills, and listen actively in order to find out what their patients need.  They try to offer bespoke care customised to the individual patient and their family.

In New Zealand on 07 November 2021 the End of Life Choice Act 2019 will be enacted which will mean that people with less than six months to live who have intolerable suffering and fulfil the criteria can legally access assisted dying services. New Zealand Hospice and Palliative Care organisations around the country have put forward a viewpoint that they are not supportive of assisted dying, and have largely not engaged with the subject at all despite it becoming legal and available in five days’ time.

What if NZ Hospice/Palliative Care was to try to empathise with someone with the opposing point of view. What if it was to put itself into the shoes of a person considering accessing assisted dying services? What might such a person have to say to them?

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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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Cancer patients can’t believe everything they read

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The stream of information about cancer treatments and cures can be overwhelming. Articles in the media such as the Guardian describe new miracle cures. It’s hard to know what to believe. This article is a good example of how media interpretations of scientific papers can be misleading for patients and families.

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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 – 3. The Distrusting Maori Fella

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Photo by LOGAN WEAVER on Unsplash

“Why do you ask that?”
“Why are you all staring at me?”
“What do you want me to say?”
“Are you trying to team up against me?”
“Are you here to interrogate me?”

He did not know us, did not trust us, he looked at us suspiciously. He had been fobbed off by the other doctors, over months. He had presented to hospital a  number of times with back pain but had left each time feeling totally disregarded. Institutional racism and inequity led to unfortunately common inaction. He felt treated as if he was, “a lazy Maori trying to skive off work.” He had always worked hard, his whole life. He was proud of having always supported his family well. Just as he had experienced his entire life, they didn’t try to know him at all and made the usual assumptions. Research tells of differential treatment that is still leading to Maori people in general dying seven years earlier than the rest of Aotearoa/New Zealand’s population.

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Bedside Lessons – 2a. The Grandma

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Photo by Rommel Davila on Unsplash

“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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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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Palace of Care – Don’t be afraid to show you care

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Photo by michael weir on Unsplash

He had loved cricket since he was a kid, had played it into early adulthood, but became a spectator once his own kids arrived. Whenever there was a Black Caps game on it was a family tradition to gather around the TV. Potato Chips and the famous Kiwi Onion Dip would materialise. A packet of Maggi Onion soup mixed with a can of Nestle Reduced Cream. The ultimate mix of flavours, salty, savoury, creamy, with a satisfying crunch covering most of the important Kiwi bloke food groups. Not so good for the waistline or the body in general, but so, so good for the soul. Today would be different, he wasn’t at home. He had been admitted into the hospice inpatient unit yesterday.

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Glen’s resources about caring for a person with dementia

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Dementia Carer-  Tips from a Mentor  Carer Fast Track® Series Books 1-11 Compiled

Preface   ISBN: 978-0-6488198-9-9  

This series of eleven booklets presents new perspectives on being a carer for a person with dementia.  These are practical tips and insights not published before.  Each 10-minute booklet is designed to fit within the limited time resources of busy carers.

REVIEWS:

“…some really cool booklets…Short, Sweet, Concrete”

Rita A. Jablonski, PhD, CRNP, FAAN, FGSA
Professor, School of Nursing

University of Alabama.


“These practical tips have been road-tested by many other carers… I commend them to you.”
Professor June Andrews RMN, RGN, FRCN, OBE


“your booklets are brilliant. Really informative, and you write so logically making everything easy to read.” Christine, UK.

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