Palace of Care – The Show Must Not Go On

Photo by Annie Spratt on Unsplash

Hey, welcome to our hospice.

I know that you put on the show for your friends and social media, but you don’t need to do that with us. You don’t have to be all right when you are feeling anything but.

We need to see the real you in order to be able to really help you.

We know how strong and tough you are.

Please don’t use up your precious energy telling us what you think we want to hear.

I will be honest with you but I want you to ask for help when you need it.

We will always use as little medication as we can, but we do not want you to put up with discomfort, we don’t want you to struggle.

We are really keen to help you, if you’ll let us.

Can you do that?

What would make this place feel less like a hospital for you?

Please bring in your own stuff to decorate the walls.

You have made brave decisions recently to stop treatment, which I fully support.

I’d be happy to explain things to your partner when they come in.

Listen to your body, don’t push yourself. Rest when you need to, think of it as a recharge. Ask for help when you need to.

Save your energy for nicer things, more important activities, like spending time with your partner.

If there is anything you disagree with, please let us know.

We’d like to give you back some control of your situation, completing the advance care plan will help.

We are on your side and will be guided by what you want, or don’t want.

Thanks for giving us a go.

Bedside Lessons – 10. Freedom to Choose

Photo by Deleece Cook on Unsplash

Working in the community palliative care team I don’t meet in person most of the patients that are under our team’s care. I often have to provide advice for people that I have never met and have to count on my staff members’ assessments as the basis of knowledge of each patient. This is how our specialist support is provided from a distance, this allows me to have about 380 patients under my consultant remote control supervision at any time. Often I will provide advice which will be conveyed to the patient and their family doctor to be actioned.

This is the story of someone I never actually met but whom I provided advice on, an elderly Jewish lady who was a Holocaust survivor. I never found out which concentration camp she had lived through but somehow she had stayed alive when many had not. When she was young all control of her life had been taken away from her. Separated from her family whom she never saw again, made to endure hellish conditions, tattooed and emotionally scarred for life, she some how made it through her ordeal. She moved to New Zealand, married a local man, had children and grand-children and a rich and rewarding family life.

Recently her health had taken a turn for the worse and she was diagnosed with metastatic cancer with spread to her brain, causing headaches, and seizures. Despite having had radiotherapy treatment and high dose corticosteroid treatment her symptoms worsened. She was still clear in her thinking but was at risk of this deteriorating soon.

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Palace of Care – Lockdown Locks and Roadblocks

Photo by Mirza Babic on Unsplash

You really need a haircut.

Yeah, lockdown hair. I usually look different, like in my ID photo, I have a nose and a mouth under my mask.

So what do you want?

I’m here to find out how you are.

I can’t keep anything down, whatever I swallow comes back up. I’m too scared to eat anything. There’s something wrong with my poos too, haven’t been for four days, usually go twice a day. Last time it was black and sticky.

Do you have pain?

No, no pain but my tummy is getting bigger, sometimes it’s hard to breathe.

Hmm, listening to your tummy it’s very quiet on the left side, but loud on the right side. What do you think is going on?

I’m feeling worse, much more tired the last few days. What’s happening in my tummy?

We know that you have cancer in your tummy. It can act like speed bumps on a road, slowing down your gut traffic, that’s why your poos have slowed down. If there are enough speed bumps in your tummy they can act like a road block, then traffic can’t get through, and has to come back up, that’s why you’ve been vomiting. We can try to loosen up the roadblock with steroid medication, and we can try and push the traffic through with another medication, but…

But…Go on tell me, I need to know.

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Bedside Lessons – 2b. What Daisy saw.

Photo by Alejandro Ortiz on Unsplash

Hi everyone,

This was the result of a writing experiment in which I re-examined the case discussed in https://palliverse.com/2021/10/25/bedside-lessons-2-the-grandma/ from the point of view of a fictional 7 year old grand-daughter:

Grandma is my BFF by Daisy

My grandma taught me to read when I was only 4 years old.

She told me about alot of cool worlds.

We visit them in some of the games we play.

My grandma is my bestest friend fourever.

In the picture I drew of her she is wearing a cape.

That was when we played supa-heros together.

We had the funnest time ever.

I laughed so much I almost wet my pants.

You want to know a secret?

Grandma is my fave.

It was scary when Grandma got sick.
She had bad pain in her tummy, and was shivering then mum called 111.
I visited Grandma in hospital.
It’s a ginormous place.
The nurses were nice to me.
That doctor is a meanie.
She made mum and Grandma cry.
Something is wrong.
Was it me?

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I think therefore I am? – Clarification

Photo by Jeremy Bezanger on Unsplash

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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