Palace of Care – No Bullshit

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She hadn’t trusted her daughters and wasn’t keen on medications in general. She had tried to hide how unwell she was. They had wanted to help her but she had felt so unwell that she couldn’t accept their help. Everything had hurt, her head, her skin, even her hair. Nausea was her constant companion, and vomiting was the guest who kept overstaying their welcome. She didn’t want to go to the hospital, she said she would give hospice a go.

“I feel heaps better today.”

“What’s going on?”

“My pain is gone, I don’t feel sick anymore since the elderly doctor started the medicines yesterday.”

“That’s good. Did you have some breakfast?”

“Yeah, I had some porridge, but they didn’t cook it the way I like it. There was brown sugar but it wasn’t quite right.”

“You managed to keep it down.”

“Yeah, first time in a while.”

“Good. What do you think is going on? What did your doctors tell you?”

“I like my cancer doctor, he’s a Pakeha but married to a Māori. He told me like it was.”

“Straight up?”

“Yeah, none of that bullshit the others had used. He was honest, and let me know what was going on.”

“You’re not going to get any bullshit here. What did he say?”

“The cancer has spread from my lungs, has gone to my head. There aren’t any treatments left for me.”

“What do you think has been going on lately to make you feel so bad?”

“Probably the cancer getting worse.”

“Yeah, I think the cancer in the brain has grown bigger. It’s giving you headaches, making you feel sick and vomit. Has your thinking been not so clear?”

“Yeah, it hasn’t been right since the radiotherapy and the chemo. If anyone asked me if they should have the treatment for cancer, I’d tell them not to.”

“It hasn’t helped?”

“No, I feel so much worse.”

“You gave it a go. I need to check with you about what you want. There’s a treatment that might help you, but it probably would only work for a short time. You could either try it or not. It’s up to you and the whānau.”

“Hmm, I’m not sure. What do my children think?”

“We want you to try mum.”

“Okay, I’ll try it. Thanks for being honest with me.”

“No worries. We’ll give it a good go, and see what happens. E noho ra.”

“See you later Doc.”

Palace of Care – Questions

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“Do you all understand what is going on? Do you know what is causing the gut blockage?”

“Is it to do with the illness? The cancer?”

“Yes, that’s right. Cancer which goes to the tummy can slow down the gut, that’s why the poos had slowed down. If there is enough cancer there it can cause a blockage, which is like a blocked pipe. Whatever goes down the pipe can’t pass through the blockage and then comes back up as vomit.”

“Can you pass another pipe through?”

“If there was only one blockage they could’ve tried to do that in the hospital, but the problem is there is more than one blockage and the re-piping wouldn’t work.”

“Could you give IV fluids, would that help?”

“IV fluids is done all the time for patients with bowel blockage in hospitals. What we have found is that the fluids can actually make things worse for the person. The fluid through the vein will lead to more gut juices being made which would increase the vomiting. Also when you are so unwell the body can’t handle the extra fluid. It ends up causing painful swelling and might make the breathing worse. We don’t want to make things worse. If I thought that giving fluids would help I would do so, but I think it would make things harder, so I won’t be doing that.”

“The cancer can cause swelling right? Is there anything you can do for that?”

“Cancer can cause swelling around it which could be leading to the blockage. We can try a steroid medication to see if it would help. We’d give it three days’ worth to see if it helped, or not. Would you like to try?”

“Yeah, I’d like to try that.”

“Okay, we’ll try that. We’ll also try another medication to dry up the gut juices, to see if it would make you vomit less.”

“You all have been asking good questions. Do you have any more questions?”

“No doctor, you’ve answered them all. Thank you.”

“You’re welcome. We’ll take things one day at a time, and we’ll always keep trying to make you comfortable.”

Palace of Care – Sat Sri Akal

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I prepared to see our patient and their spouse. They had been doing well until the past week. Then the weakness and fatigue worsened. They didn’t have the strength to leave the bed. Their spouse looked after them well. Their children were parents too. They were proud of their grandchildren. A close family but COVID-enforced separation had meant they had only seen one of their children once in two years. The same two years that cancer had taken over.

The spouse was worried about sedation from medications. The patient was reported to be in a lot of pain and could use more medication. Breathing was laboured. The patient had not spoken clearly in the 48 hours preceding the admission. As soon as I entered the room I noted the distress on the patient’s face, mirrored by the look of concern worn by their spouse. I needed to establish rapport quickly, as the suffering needed to be attended to urgently. I recognised the traditional turban and greeted them with, “Sat Sri Akal.” A look of surprised appreciation crossed over the spouse’s face. The patient stared blankly at the ceiling in a confused manner.

“They’ve been uncomfortable overnight with pain. I need to do something about it. I’m worried that it isn’t safe to swallow anymore. This is what happens at the end of life when someone is dying.”

“Can I feed them, they haven’t eaten since yesterday.”

“When someone is very unwell they can’t handle the food. They can’t swallow safely and it might end up in the lungs. It might cause vomiting or diarrhoea. I don’t want to make the situation worse or increase the suffering. We need to give medications by injections, under the skin.”

“Subcutaneous?”

“Yes, that’s right. It will be the safest way to give medications, to make sure they go where they are needed.”

“Okay, how much time do we have left?”

“I’m sorry, your spouse is so unwell, they might only have hours to days left to live. They could die at any time. I’m sorry.”

“No, no need to be sorry. It is part of life, it is something that we have to face at some stage.”

“We will do our best to make them comfortable, no matter how much time is left, we will keep on trying. We want to calm down the pain, calm down the breathing, calm down nausea and distress”

“Thank you, doctor.”

“How long have you been together?”

“44 years.”

“I’m going to change the medications now. Please let us know if you or your spouse need anything. Take care.”

Palace of Care – Something in Common

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I was introducing myself to a new patient.

He asked, “Can you speak Mandarin.”

I replied, “Yes, I can.”

“Where are you from?”

“I was born here.”

“What people do you belong to?”

“Hakka.”

“Really? Me too.”

“My family are originally from Guandong Province, Meixian County.”

“Mine too.”

“Wow, we could be cousins. How are you feeling?”

“Not good, I’m short of breath, can’t relax. Pain in my throat, and I’m having trouble swallowing. I keep on choking, even on water.”

“You must be exhausted.”

“Yes, I just want to sleep. I know what is going on, I don’t have much time left. This cancer has been really bad.”

“Yes, it has made you really unwell, I can see your arms are swollen.”

“Yes, that just happened yesterday, everything got worse in the past week, it’s too fast.”

“I’ve prepared my funeral plans, I’m ready to go, I know what is ahead of me.“

“We’re going to get you through this, and we’ll look after your family as well.”

“Do you or your son have any questions?”

“No, not at the moment.”

“You just let me know if you want to talk about anything, or if your family have anything they want to know.”

“Okay, thanks doctor.”

“I’ll adjust your medications now.”

“Thank you, I’ll see you later.”

Our families had originated from the same county and province of China and had then moved to different parts of the world as part of the Chinese Diaspora. Many years later we both met each other in the hospice inpatient unit. Having something in common really helped me to establish rapport.

Palace of Care – What’s in a word?

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It was his second admission. He had been beautifully cared for by his family over many months, but the last week had been terrible. He was agitated, restless, and did not know what to do with himself. His wife wanted him to come back into hospice for end of life care.

On arrival he was semi-conscious, agitated and not able to talk clearly. His body was so unwell that his mind was no longer able to be lucid. Although he tried so hard to be there, it looked as if he was in-between two worlds. His family reported that he had seen dead ancestors.

I didn’t want there to be any surprises: I spoke in a quiet voice and tried to be as clear to them as possible, using simple English.

He is so unwell, so exhausted. He is dying.

I purposefully used the word dying at least five times during the 15 minutes of my visit.

When someone is dying everything inside can become all messed up, like he’s in a storm. He doesn’t know which way is up or down, and it might be really scary for him.

End of life delirium/terminal restlessness.

When someone is dying, they become less clear in their thinking, and sleepier. That is Nature or a higher power’s [palms open being raised towards the ceiling] way of protecting the dying person from having to have the full 3D/HD experience of dying.

He could see that his own distress was causing distress to his family, which caused him further distress.

I will change his medications to relax him. We’re going to calm it all down, and we are going to get him through this. We’re going to get you all through this.

I was caught off guard when he suddenly opened his eyes and reached out to shake my hand in both of his. He thanked me for what I had done for him.

Nek minnit – [I was being hugged and I hugged him back.]

Palace of Care – Polypharmacy Pals

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Not Cap’n Crunch cereal but he ate them like lollies, 5 tablets at a time crunched in his mouth like candies. It was strangely fascinating to watch him do it.

Were they really helping him? We didn’t really know, but that’s what his Cardiologist had recommended at their last appointment, and as a model patient he would follow the instructions carefully.

It hadn’t always been like this, two years before life in his small town was normal. Not much to do in the weekends, so like everybody else his age he dabbled in recreational drugs.

Weeks later and his breathing became worse, he thought it was due to a reactivation of his childhood asthma. He didn’t do anything about it but then things worsened and he went to see his doctor. He was prescribed Asthma inhalers but they were ineffective. Back and forth to the doctor he went, with no improvement. A chest x-ray was ordered and surprisingly showed severe heart failure. Further investigations were performed including an echocardiogram. Working diagnosis was of severe cardiomyopathy secondary to methamphetamine abuse. The drugs he used had left his heart permanently damaged.

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Palace of Care – Charm Person

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I have only ever played the computerised version of Dungeons and Dragons, the fantasy role-playing game, and the version I played was more of a battle simulator. You went on quests with your band of characters, exploring different places, constantly running into trouble. Fights would involve cold hard steel, and mysterious magical spells. Some spells had obvious intended effects, e.g. Stinking Cloud (now that’s magic that I have understood since I discovered baked beans as a kid,) Hold person. A favourite spell of mine was Charm Person, casting this spell on an enemy could instantly change them into a team-mate.

As I started practising medicine as a junior doctor I often fancifully wished that some of the Dungeons and Dragons spells would work in real life. Over the past 22 years I have searched for Heal Person, Cure wounds, Revivify and have been caught short. If only life was that easy. I often wish that I had a magic wand that could change my patients condition for the better, I really do. Or magic pills or potions that would lead to a cure. Sometimes the best magic I can offer is to soothe suffering, provide comfort, offer support. On occasions I have had to use Charm Person, and sometimes even Charm Monster.

Illness can bring out the worst in people, but some people might not have been all that easy to get along with even when they were physically well. There are no difficult people or patients but at times communicating with humans can prove to be a difficult endeavour.

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Palace of Care – See the difference Mum?

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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 – My Favourite Thing

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I was asked by medical students, what was my favourite part of working in Palliative Care? I instantly replied, having a laugh with my patients and their families. Even though a person may be dying, they hold on strong to their sense of humour as it still feels good to laugh. To see the lighter side of even your own end of life is something that I have seen often. People still want to feel included in life and still want to have some fun. To be treated like a normal human being. My favourite thing after 22 years of medical practice is having a good laugh with my patients.

Last Friday, we had a great time joking around, whilst getting to know each other better. Pain and nausea had settled after a few days of hospice work. It was good to meet him properly for the first time, with his quick wit in full flight. I had trouble keeping up with him, a quip every other minute, followed by puns. Two proponents of Dad Jokes performing sit-down comedy, both riffing off each other’s comments, and enormously enjoying each other’s company. Each the perfect audience for the other. Our companions in the room were briefly forgotten, but we didn’t want them to feel lonely and started including them in our fun making. My team mates were included and then my comedy partner’s family. There were no taboo subjects as we launched into our roast of our room-mates.

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Bedside Lessons – 18b. A troubled young man Part 2

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His blood test results came back and were unusually good, the blast cells were reduced in numbers compared to on admission. Bloods were repeated weekly, and they continued to improve, to the point that there were no longer blast cells present at all. The Haematologist was contacted about this unexpected finding. She was surprised as his blood tests hinted at something that they had never been able to achieve before. Was this a remission?

A bone marrow biopsy was urgently organised, and revealed a pre-Christmas miracle – remission was confirmed. Somehow his disease had been controlled, by what we all did not know. Plans were hastily made for our patient to undergo a bone marrow transplant, with everyone’s hopes raised that it would lead to longer term control.

Our patient had mixed emotions, since he had become sick this was the first time that he had received good news, and he didn’t know how to handle it. He didn’t celebrate his remission as much as his family and clinicians did, as he couldn’t totally believe it. He was discharged home to his family’s rented home for Christmas together, with everyone hoping that a better year lay ahead.

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