Tag Archives: understanding

I think therefore I am? – Doublespeak

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Photo by Kyle Glenn on Unsplash

Words need to be chosen carefully. We don’t want to cause distress or harm from the things that we say. We have to be mindful of others’ reactions to what we have told them. We need to be clear with the message that we are trying to broadcast. We need to say what we mean and mean what we say. The same is true when it comes to talking about death and dying. People often avoid using those “D” words. Is this because they are trying to protect the listener or themselves? The use of euphemisms can make the message unclear and confusing. Especially if English is a second or third language for people. What terms can you think of to avoid using dying and death?

They are about to pass away. They have passed away. – Overtaking whilst driving?

We are about to lose them. They are lost. – GPS would help?

They are about to leave. They are gone. – On holiday?

Time is running out. Time has run out. – On what? The Boxing Day sale?

Time is short. There is no time left. – On your Netflix subscription?

They are deteriorating. – Standards are dropping?

They are declining. – What an invitation?

They have extreme frailty. – I have extreme confusion.

They are on the edge. They have fallen off the edge of the cliff. – Quick, call a tow truck.

They are running out of fuel. They are empty. It wouldn’t happen with an EV?

They are really, really sick. – That’s why they’re in hospice right?

They are about to go to a better place. They’ve gone to a better place. – Alabama?

They’re stuffed. – Like a fluffy toy?

It’s the end of the line. – The front of the queue?

They’re approaching the finish line. – About to win the race?

And the list goes on and on….Please feel free to add any favourites in the comments.

What I usually say is, “They are dying. They have died.”

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 – 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.

Palace of Care – Prelude to A New Dawn

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The illness had affected her speech making it difficult to understand. With some effort I could tune into what she was saying but there were some things that I could not understand. It was frustrating for her as her mind was sharp but the words would not come out right. The nerves controlling her vocal cords and her breathing muscles were not doing their job any more. She tried to tell us about her suffering but she could only use short sentences. She hadn’t been able to raise her voice for years, and even if she wanted to scream out loud, only a whisper would’ve been heard.

Her pain was not physical, she could handle physical pain and simple pain relief would have helped. The agony she felt she could no longer describe in words. Her sense of wholeness had long been destroyed, her ability to exist as a person had been torn apart. Mere words could not describe the torment she had lived with for six years. I tried to listen to her actively, I tried to read her situation, her illness ravaged poker face only provided scant clues. Intellectually I had an inkling of what she had lost, but I could not feel it during our first meeting. I needed more information before I could understand.

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I think therefore I am? – Yearning for connection

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Photo by Toa Heftiba on Unsplash

What this palliative care doctor thinks:

It’s not just about language, that’s why Google translate can’t replace human interpreters at the moment. It might be able to translate the words literally from one language to another but it doesn’t yet have the cultural context of where the words came from. The history of the language has not been programmed into it. Take English for example a lot of the words we use are derived from French and other Latin-based languages. You don’t ask for sheep meat, you ask for mutton from the French mouton. Similarly beef, not cow meat, from the French boeuf. A translator program is not the same as an interpreter program. Google Interpret would have to be much more sophisticated and would need cultural programming as well as linguistic programming.

A person may be speaking Chinese, but they are also living Chinese. The food that they eat, the clothes that they wear. Rituals that they follow to celebrate life, and how they deal with death and dying are the missing parts of a person’s identity that cannot be easily translated.
The most important tool I have as a palliative care doctor is my ability to communicate. I make a point of greeting my patients in their native language as much as possible. My accented version of their language is my attempt at providing them with a hint of familiarity. In the area I work in people come from all over the world, from lots of different cultures, with over 200 different languages spoken in our area. I certainly do not know all the greetings that are available but a quick Google search can provide me with at least a few words of greeting. A little demonstration of respect that I have made the effort to try to connect with another human being. It may have taken me ten seconds to type in my query but it can often bring a smile to a weary sufferer, whose illness has taken over their body. Someone for whom English may be a second or third language. A little snippet of home, can make a real difference.

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Palace of Care – See the difference Mum?

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Photo by Amir Esrafili on Unsplash

The other doctor was Asian too, but he had such sad eyes.

I said to him, don’t look at me with your sad eyes.

See mum, he just told me really bad news, but he did it in a gentle fashion.

That’s the difference compared to the hospital doctors.

He sat down, talked to me, we had some laughs.

He prepared me for the bad news and then delivered it, and didn’t run away.

Sat right in front of me, asked me if I had any questions.

The others sort of threw the bad news at me, and then ran out of the room as if they’ve just thrown in a grenade.

Danger, danger, gotta get out before it explodes.

Hot potato, pass it on, quickly or you’ll burn your hands.

I can handle the bad news, I’ve had plenty of it. Where’s the respect, you just tell me the worst thing in the world, and then you run off as if you are the one who is hurting?

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Palace of Care – Traffic Conditions

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Photo by Erik Mclean on Unsplash

Metastatic cancer deposits in the abdomen can act like speed bumps on a road, slowing down the traffic of the gut, that’s why there is a greater tendency towards constipation. As these cancer deposits grow they can make things worse and if they are big enough can cause a roadblock, a bowel obstruction. The gut traffic will try to push through the roadblock but cannot do so, this can be painful, and will lead to reversal of the traffic flow, vomiting.

One of our treatments involves loosening up the roadblock with corticosteroids, they sometimes can decrease the swelling and inflammation surrounding the cancer deposits.

We have medications which we use to try to push harder through the roadblock – pro-kinetics which increase gut traffic.

The gut’s job is to digest food, and it produces around 2-3 L of digestive juices every day. We have anti-secretory medications which can reduce this production, helping symptoms by decreasing the volume of gut traffic.

There is a physical treatment which can be considered but which is more uncomfortable and invasive – the nasogastric tube. A tube inserted through the nose, goes down the throat and into the stomach, providing an alternative route for the vomit to leave the stomach – A detour.

Sometimes the roadblock/obstruction can be overcome, but a lot depends on the driving conditions as well, the overall health of the countryside – the person’s general health status.

If only there was a traffic forecasting system or GPS system that could help us to tell how the journey ahead will be. This does not yet exist with the current state of medicine and technology.

Despite the destination being the same, each individual trip may be completely different, and we can still modify try to modify the quality of the experience.

Please drive carefully if you are journeying on the roads during the holiday season.