Category Archives: Practice

Palace of Care – Relentless Pursuit

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Photo by John Thomas on Unsplash

It’s one thing after another, after another. I’m not usually like this but over the last months I’ve been worn down. It’s too much to handle. I’m not sure I can go on any longer. I feel so terrible. I don’t think I can take much more. You know what I think is happening? I think I’m dying. I think I’m dying.

You might be right, but you’re not dead yet. You’ve had a lot happen to you in hospital. The operations, the blood clots, the infection. Nature’s been trying to take you out.

I just want to go home. I love my home. I built it myself, with my own two hands. Your place is better than the hospital, but it’s nothing compared to my own home.

Sure. We’ll try our best to get you home as soon as possible. I don’t think you’re ready yet. You only arrived a few hours ago. We need to get to work calming down your pain and nausea. I want you more comfortable before we can get you home. The last thing I want is for you to bounce back and forward between home and here. I would like to prepare you for one good discharge.

Okay, that sounds good. I just had to get out of that hospital. I couldn’t stand it any more. I wanted out so badly. It’s just too much to take. Sobs loudly

We’re going to get you through this, and your family too. We’re going to keep a close eye on you and will treat your symptoms aggressively as we know you want to get back home as soon as possible. Do you have any questions?

Palace of Care – Easter Face/Off

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Photo by Jerry Yu on Unsplash

Easter was about to arrive. At the last minute, I asked my wife and daughter if they had bunny ears I could borrow. They replied yes but they were unable to or me. Just like an Easter Egg a cunning plan was being hatched. Leftover Christmas decorations were examined and a pair of antlers were found. With the addition of cardboard, staples, and a hair tie, bunny ears had been produced out of thin air.

I wore the bunny headband for my whole workday. Anything for a laugh. The patients and their family members bore witness to my madness.

Later in the day, I met the son of one of our patients. He didn’t have clown makeup on and was of a serious demeanour. Facial tattoos adorned both cheeks. A proud member of one of New Zealand’s infamous gangs. We were both in the room because of the patient. Both of us trying to do the best for him. I tried my best not to stare at his facial tattoos. He tried his best not to stare at my bunny ears.

“Happy Easter,” were the first words I said to everyone in the room. Reading the logo tattooed on the son’s cheek I found out he was a member of team blue. I’d had a number of dealings with various members of this gang in the past. He stayed outside of the room but popped his head through the open window. I spoke to his father to see how I could help. Pain, nausea and hiccups were the main issues troubling my patient. He knew he was critically unwell and agreed with my plan to calm down his symptoms. His wife couldn’t keep a straight face as she tried not to laugh at my bunny ears. On that lighter note, I left the room.

A few minutes later our charge nurse had to go back in to talk to the patient’s son. He was smoking cigarettes on the balcony outside of our patient’s room. She asked him politely to stop smoking as it was a health and safety risk as our balcony is wooden and at risk of fire. He put out his cigarette without any comments or fuss. We have rules we have to comply with otherwise we’d be shut down.

We look after all sorts of people from all sorts of backgrounds, and all sorts of families. Even hardened criminals can be vulnerable when their loved ones are dying. They need to be treated with compassion and professional courtesy regardless of our own personal opinions. They want our best professional opinions when they meet us at work.

Palace of Care – Shorts 3

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Photo by Pars Sahin on Unsplash

Will another CT scan make things worse for her?

The scan itself wouldn’t make much difference. But the energy used to go out and get it would not be a good use of the precious time she has left. We only do tests if the results might change our treatment plan.

I wouldn’t recommend a scan as we already know what’s going on.

It would make it more real for us. We know what is happening, without the tests.

But she really wants it.

We can’t request scans ourselves. You’d be better off contacting the Oncologist, to ask his opinion.

How much time does she have left? Will she still be alive in two weeks’ time?

I don’t know. She might still be alive, or she might not last that long.

Is there anything else that we can do to treat her?

No, the Oncologist has tried all available options. If there was anything else available he would have done it already. I’m sorry.

We don’t want to be sitting and waiting. We want to do something.

Her time has become so precious.

Nod.

We will always be trying to do our best for your wife. And sometimes that might mean saying no to things you ask for.

Palace of Care – Shorts 2

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Photo by Kier in Sight on Unsplash

You’ve been very unwell.

Nod.

How’s your chest, any pain?

Shake of head.

Do you still have nausea?

It’s pretty bad.

And your breathing?

No good.

How long have you had the hiccups?

Two days.

What did the doctors at the hospital tell you about your condition?

They said it’s no good.

Did they talk to you about time?

They said it was bleak.

Nod. We’re going to work on making you more comfortable. Starting with your nausea and breathing.

Okay.

We’ll see if we can calm things down for you.

Palace of Care – Shorts 1

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Photo by Andrea Dibitonto on Unsplash

I’m sorry for your loss.

Are you sure he’s died? I thought I saw his nose move before.

Let us check. There’s no heartbeat, no breath sounds. No eye reflexes to light. He is dead.

Tears. I can’t believe he’s gone. He was such a good man. A good husband.

A very good man who looked after his family.

The cancer came on so fast. He was often doubled over in pain. It was horrible to see him suffering like that. Then he couldn’t eat. It was awful.

Yes, it was. No more suffering now. He can truly rest.

I thought he could hold on for longer.

He tried to. His mind was strong but his body became too weak. It was too much for him to handle. How long have you been together?

43 years. I’m two years older than him. He wasn’t supposed to die before me. He looked after me so well when I had cancer.

Palace of Care – Level of Detail

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Photo by National Cancer Institute on Unsplash

When it comes to being told stuff do you want to know the full details?

Nod.

My colleague said that you want us to be straight up with you, is that right?

Nod.

What did the doctors at the hospital tell you?

They said it was pretty bad.

Yeah. What happens with Leukaemia is that one type of abnormal blood cell takes over the bone marrow. The bone marrow is your body’s factory, it makes all the blood cells. The red blood cells carry oxygen around. The white blood cells fight infection and the platelets stop bleeding. The leukaemia is stopping all of these blood cells from being made. This is really dangerous as your immune system can’t work any more, and any infection is dangerous. You are at risk of bleeding. The leukaemia cells cram up your blood vessels and they can block them off which would cause painful areas to appear.

Nods slowly.

Did they give you a timeframe?

Shrug.

Would you like me to talk about your time frame?

Nod.

I’m not sure how much time you have left. It could possibly be only days to short weeks. Things could worsen quickly and then you might only have hours to days left.

Oh.

We want you to know that we are prepared for what usually might occur in your kind of situation. If you need emergency treatments we want them to be available at any time.

Nod.

I’m sorry to have to give you bad news. If you still have important things you need to sort out, it’s better to do it now while you are still clear in the head. Better early than too late.

Points to his computer. That’s what I’m doing.

Good. What’s the most important thing to you right now?

Points to his partner. She wraps her arms around his head and cries into his hair. He clutches her arm tightly and cries into her forearm. They hold each other tight and sob loudly.

Let it all out. It needs to come out. You are safe here. We are all here to help you. We will get you through this, both of you.

Palace of Care – Deadline

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Photo by Tim Gouw on Unsplash

The work was different in the past week. In between clinical tasks, I worked to meet a different deadline. I wasn’t writing my own work, instead, I had assumed the role of publisher.

One of my patients had written five books and had always wanted to have them published. In recent weeks he became critically unwell and was unable to publish his books himself. Thanks to what I had learned over two years as a member of Writing In Community I started helping him publish his books using Amazon Kindle Direct Publishing.

Last week I had a different kind of deadline pressure to work under. I wanted to publish his books before he died. Every day his condition worsened. His time was running out. I still had other patients to review.

In my spare time, I worked on his books. Preparing cover pages. Adjusting blurbs. I didn’t have enough time to edit the over 1000 pages of words. It meant a few late nights and I ended up arriving for a video interview with less beauty sleep than I had intended. Would I make it in time? Would he still be physically capable of viewing his own e-books? I wasn’t sure, he was deteriorating every day, becoming sleepier and more unwell. He was dying

I converted the MS Word documents into epub books. I took my laptop into his room and showed my patient the finished products. Not a perfect job at all but good enough in the time constraints I was under. Phew!

I confirmed with him when he wanted the books to go live. Books two to five could go live right away. For Book One, the most personal one, he wanted me to wait until a month after his imminent death.

The next morning he wasn’t able to speak to me any more.

I wasn’t surprised when the month countdown started less than a day later.

Palace of Care – It’s hard enough just breathing

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Photo by Mick Haupt on Unsplash

“The last thing I remember was waking up early to watch the Rugby Sevens, after that I woke up in hospital,” was what he wrote using a green erasable marker pen. In between sentences he would wipe his mouth with tissue paper. A combination of stroke loss of function and rapidly growing mouth cancer led to him not being able to close his mouth fully. Saliva would pool in the lower left corner of the mouth before gravity would send a small waterfall running down his jawline. He was quite conscious of this and had already tucked three extra tissues under his chin to catch the drool.

The next sentence he wrote said, “my sister didn’t know that I did not want to be resuscitated if I became unwell again.”

“Do you mean you wish they hadn’t treated you the last time you were in hospital?”

Nod.

“Since leaving hospital you’ve stopped most of your medications. If you were to get another pneumonia would you want to be treated?”

Head shake.

“If your heart or lungs were to stop working, would you want us to try to start them again?”

Crosses his hands in front of his face, and shakes his head with vigour.

“You’ve had enough haven’t you.”

Nods his head three times.

“There’s too much going on. Your lungs aren’t working, your heart isn’t working, and you’ve had a bad stroke. Then you got a nasty mouth cancer on top of all that. Isn’t that a bit greedy of you?

Shrugs shoulders while smiling with the right side of his mouth.

“I know you are in a lot of pain from cancer and you’ve had bad nausea. Are you still wanting to have the tube feeds?”

He wrote, “It’s hard enough just breathing.”

“You don’t have to have anything that you don’t want to. Your body is so unwell that it can’t process the food, that’s why you’ve been vomiting and have had loose poos. You are struggling. I’d like to try to calm down your breathing with some medication.”

Thumbs up.

“Your family are coming to see you soon?”

Nod and half-smile.

“I’d like to start some medications for you through a syringe driver.
I’d like to calm down your symptoms over the next couple of days. Please let us know if there is anything you need. We’re going to get you through this.”

“Thank you.”

“Thank you for building our hospice.”

Palace of Care – Goosebumps

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Photo by michael schaffler on Unsplash

What’s in the bowl on the table?

That’s sand and a shell from his favourite beach.

Really?

Yeah, and in the bottle is seawater from the beach. He spent a lot of time on that beach and in that water during his life.

Wow, I’m getting goosebumps just hearing about it. Oh hello, Aunty, how are you?

I’m good. Just let me play him something on my phone.

Oh, what are you playing?

Sounds of waves hitting a beach.

From his favourite beach?

No, but most beaches sound pretty similar, right?

Oh right. That’s a really nice thing to do.

The beach and water are where he is heading. He’s going to see his Uncle and they will go sailing together again.

Just like when he was a kid.

Yeah, that’s when his lifelong love of sailing began. He told us today that he’s ready to go. Do you think he will die today?

He might do, but that’s what I said six days ago. I’m not sure, he’s stronger than most humans. But he may have finally let go. No matter what happens we will keep him comfortable.

Thank you.

I think therefore I am? – Chosen One

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There’s usually one person in the family who is the go-to person when it comes to anything to do with death and dying. They are the one that everyone else relies upon when times get tough. They are the one who is called when a life is at risk. They are the one that everyone else counts on to get them through tough situations. They are there to liaise with the medical teams. They will drop everything to attend to the needs of the unwell person, even if it means their own needs do not get attended to for some time. They are the one who copes on behalf of everyone else. They will translate the bad news into more acceptable language.

They didn’t get a choice in these matters. Everyone else just turns towards them. They end up being a key conduit of information, from the family to the healthcare team. They will also relay information from the healthcare team to the rest of the family. The bad news may be broken to them in the first instance and they will broadcast the message in a way that their family will understand.

It’s difficult being that person. You are so busy taking care of everyone else, that you don’t leave much in the tank for yourself. You keep on doing your assigned roles. Someone has to do it. When everyone else is busy grieving and crying, someone has to call the Funeral Director. Someone has to organise the service, the funeral booklets, what songs to play, and what speeches are to be presented. No time to grieve when there is so much to do. That can wait until everyone else is taken care of.

Sound familiar?