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

Photo by David Cain on Unsplash


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.


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

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


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.


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 – 3. The Distrusting Maori Fella

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

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

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

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

Description automatically generated

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.


“…some really cool bookletsShort, 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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Palace of Care – Friday morning hospice ward round cryptic crossword

Photo by Ross Sneddon on Unsplash

1: Impromptu quartet sang – One of the members in great need of a barbershop.
2: Wedding planners hard at work.
3: You took the words right out of my mouth – Rock cake, Crap.

4: Worst fears confirmed with some relief evident
5: A torrent of emotional pain released as a primal scream.
6: My heart will go on?

1: Have you heard the one about the patient, her daughter, and her two doctors?

How did you meet your husband?

A lot of people have asked me that, they always want to know that. It was nothing to do with me, God made it happen. After we married we travelled to many of the Pacific Islands, as missionaries, we took our kids with us. He started off being a teacher, then he became a minister. I helped him with both. It was hard work but a good life.

You must have helped many people.

Yes, we enjoyed it very much. I really miss him, he’s been gone four years. I will be with him again, that’s the only thing I want now. To be with my husband again, back home.

You’ve been really unwell lately, but you have improved again. What makes you so strong?

You want to sing a song?

I’m not sure that’s a good idea, I don’t want to distress you with my voice. I once took singing lessons some years ago. My wife says I should find my teacher, and ask for a refund.

Go on, just one song.

Umm, I’ll do it if you sing with me. What do you want to sing?

Hmmm, you choose.

Let me think…Amazing Grace.

Amazing Grace, how sweet the sound
That saved a wretch like me
I once was lost, but now am found
Was blind but now I see

Sunbeam smile from the patient which lit up the room.

Daughter smiled and was able to truly relax for the first time in weeks.

Behind her mask the young doctor smiled in surprise at the simple beauty of the moment.

The masked older doctor smiled as he was reminded of why he works in hospice.

Thank you again Glen for sharing your wisdom

Dear Palliverse Community

Five years ago, I started a Palliverse discussion with a contribution about my role as a carer for my wife, Carole with dementia. Carole died in 2019 when her cognitive abilities were no longer sufficient to maintain the routine function of vital organs.  So Carole literally died of dementia which is not very common.  Many patients die of injuries or comorbidity factors.  We did the whole journey together.
I resolved to write booklets to help other carers in the various stages of dementia.  To have this done and published while memories were fresh, I gave myself a year (and used almost all of it). I published eleven brief booklets on Amazon in 2020.

1.     Dementia Caregiver Survival 
2.     Tips For Newbie Dementia Carers 15 
3.     Tips For Communicating 28 
4.     Diagnosing Dementia 38 
5.     Take Genetic Testing? 61 
6.     “I’m FINE!” Coping with Anosognosia 68 
7.     Managing The Rage Stage 73 
8.     Selecting a Dementia Residence 89 
9.     Managing Dementia Placement 97 
10.  Coping with End of Life 107 
11.  Picking Up The Pieces 121 
12.  Manejando la etapa de la ira. Libro 7 de la serie 134 
13.  Bien gérer les accès de colère  Volet 7 147 
14.  Dementia Carer-  Tips from a Mentor (the compilation of 1-13)   This book 

I was born without my share of the Mother Teresa gene, but I learned a lot along the way and became a mentor on an international carer support forum.  The booklets have been well received by carers, and professors of nursing wanted a compilation for use in education. The compilation is now used in nursing degree courses in USA, Canada and UK. In 2021, the compilation has become a teaching resource in Australian tertiary studies.

I should pass on to practitioners some observations I recently made to another carer, a Kiwi to whom I am a mentor.
“The thing I continue to find remarkable is the reception of the booklets by leading practitioners.  These booklets were written simply for fellow carers.  They are brief because carers have little time.
“The compilation was a hasty afterthought when the booklets first caught the eye of a nursing professor. It made no attempt at continuity or de-duplication or any kind of rewrite… just a stack of booklets under a title !”

Your enthusiasm is very flattering to me.  The simplicity of expression in my booklets was intended originally to reach fellow carers.  It results in reviews like ‘raw’ and ‘frank’ and I guess it makes these resources stand apart from professional and academic literature on these subjects.You generously noted they are practical and experienced.  Those are the attributes that appeal to other carers and that is where these booklets are truly innovative.  Some ideas here have not found expression elsewhere in any form at all.So I am most grateful for your endorsement to some colleagues and I hope to continue to contribute.
If you can forgive the literary shortcomings and the blunt presentation, I believe you will find more practical help and support in these booklets than elsewhere.  I offer this resource (Word file attached) for use by Palliverse community members and for referral to carers of persons with dementia. The link follows to the publications from Amazon.


Cancer patients can’t believe everything they read

The stream of information about cancer treatments and cures can be overwhelming. When the Guardian describe new miracle cures. It’s hard to know what to believe. This article is an example of how biased interpretations of scientific papers can be misleading for patients and families.

Let’s find out if this new cancer treatment can wipe out tumours in terminally ill head and neck cancer patients as claimed.

A cancer patient on the trial, Barry Ambrose, 77 is interviewed. The cancer in his throat was no longer detectable after his immunotherapy. He is delighted.

I looked for a link to the original randomized controlled trial. Eventually I managed to find the paper in the medical literature. But surely, I had found the wrong paper? This paper had a different conclusion, that there was “no improvement in survival” with the new immunotherapy treatment. How can this be?

The Checkmate 651 trial asks : if you have a high-risk cancer of the head and neck, is immunotherapy or standard chemotherapy a better first treatment?

947 patients were randomly put into two treatment groups – half had immunotherapy and the other half chemotherapy.

The people having the new immunotherapy treatment did not live longer than the people having the old chemotherapy treatment. The study did show a couple of differences in treatment group outcomes. The immunotherapy sub-group lived for a median of 17.6 months compared with 14.6 months in the chemotherapy group, but this three-month difference might have happened by chance according to the statistical analysis. More people were alive at 2 years after immunotherapy in a subgroup (26% compared with 16%). The immunotherapy treatment, if it worked, worked for longer at 33 months compared with 7 months.

The main author of the study Dr Argiris is here speaking about its results.

The study is at risk of bias because it’s paid for by the drug company that benefits if it is successful. It did not show that immunotherapy is superior to chemotherapy, despite the Guardian headline. It did show that immunotherapy has fewer side effects than immunotherapy – but we already knew that from other studies. In a subgroup of patients, those having immunotherapy died a median of 3 months later but this result was not strong enough to meet the criteria for being statistically significant, meaning it could be a chance result. For those who did respond to immunotherapy, though, it was a longer time before their cancer came back.

It is so important for patients with cancer to have a good understanding of potential treatments – both their risks and benefits. This enables the person to make good decisions about their medical treatments.

Can this “new cancer treatment … wipe out tumours in terminally ill head and neck cancer patients”? Sorry, not enough evidence to claim that. The treatment has fewer side effects and if you respond to the treatment the beneficial effect lasts longer.

If you find information about a new treatment, discuss it with your oncologist and see what they think. Unfortunately, we can’t believe everything we read about new miraculous treatments.