Palace of Care – A Father’s Grief

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I went to see the new patient who had just arrived by ambulance. A Chinese man in his 30s who was drowsy and confused. He wasn’t able to move out of bed, and needed full assistance with all cares. He was accompanied by his wife and his father. Our patient’s English was reported as good but he wasn’t alert enough to answer many questions.

“Where are you sore?”

Hands pointed to his abdomen as he grimaced.

His father said, “He’s always considered other people before himself. That’s how he’s been since he was a young boy.”

I made some adjustments to the patient’s medication to try to ease the suffering.

His father came to speak to me, and I ushered him into a small meeting room.

He was angry and devastated. He spoke to me in Cantonese which I have some understanding of, thanks to a childhood of watching Hong Kong TV series on VHS video tapes. My usual slow process with Cantonese, is to convert it into Mandarin and then into English. I have trouble when trying to go back the other way, so don’t speak Cantonese.

He recounted the clinic appointment they had attended yesterday. They had driven from home to the Oncology Centre. His son required a wheelchair as he could not walk the long distances. The Oncology registrar that met them was Chinese and spoke Cantonese. He asked if his son could lie on the bed as he was tired from sitting up for hours to get to clinic. The registrar answered no, that the clinic was too busy today. This surprised the father who said, “Couldn’t they see how unwell he was? Then they told us bluntly, there was nothing they could do for my son. That he was dying. I was so angry that I wanted to complain, but my son wouldn’t let me, he told me to leave it, and that he wanted to go home.” I listened to him for 45 minutes and talked to him in Mandarin which was our shared second language. He had calmed down and was able to head back into his son’s room.

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Palace of Care – Calling The Shots

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I asked her, “How are you doing?”

She was dozing off in her chair and her partner answered, “She’s okay, just really tired.”

“You had a lot of pain last night, you still look sore at the moment.”

“No, she’s not in pain, sometimes her face just looks like she’s in pain. She’s pretty good at the moment the cancer lumps in her tummy were sore before, now they are okay.”

“You were on the pump before, did it help your pain?”

“Yeah, it did help my missus’s pain, but then we went to the traditional healer and he told us to stop the pump. Since then the pain hasn’t been as bad as it was. We stopped the pump last week.”

“You’ve needed seven extra doses since yesterday. I’m worried we aren’t controlling your pain enough.”

“No, you are doing all right. My missus will tell you if she needs more. She wants to call the shots.”

“How long you guys been together?”

“16 years.”

“Cool, how did you meet?”

“At church. She was a church girl, me I was a wannabe gangster. My missus straightened me out. Now I’ve become a workaholic, I work for my family, that’s the most important thing for us. To give our kids a good upbringing.”

“You guys make a good team.”

“It’s my missus, because of her I changed for the better, it took her five years but she sorted me out. She’s my boss.”

“Were you guys scared of hospice before you came in.”

“Yeah, we tried not to come in for the last couple of weeks. We wish we had come in sooner. She hates the hospital. She wasn’t sure about hospice.”

“Are you still scared of hospice.”

“Nah, it’s a good place, you guys are taking good care of her, and the whole family. We feel safe here, you guys listen to us. In the hospital they just kept giving us bad news, and then more bad news. And just when we thought we’d heard it all, even more. My missus just wants to make the most of each day, but we know how unwell she is. This place would be a good place to be at the end. She feels safe here, you guys treat us really well. We are still praying for a miracle.”

“You keep on praying. We just want to try to make her more comfortable. I think we could do better with her pain control, we may need to start the pump up again.”

“My missus wants to stay off it, but if things became too bad, if you thought she’d really need it, it would be okay to start it again.”

“Okay, we’ll try to keep her off it, try to do things her way as much as possible, but if things get really bad, we’re not going to let her suffer.”

“Yeah I just want her to do what she wants.”

“Do you have any questions?”

“Yeah. Do you think you could help us, ummm, we’ve been together a long time, and we had planned to get married last year in our backyard. But then she got really sick, and ended up in hospital, again and again. Do you think you could help us arrange for someone to come in to marry us? We just want it simple.”

“Yeah sure man, we can help, it’s been a while since we’ve had a wedding here. We’ll get the team going, we’re all keen to help. Just remember it’s your wedding, not ours.”

“Thanks, maybe if we get married then she’ll have a miracle.”

Palace of Care – Prognostication Scanner

Photo by National Cancer Institute on Unsplash

One of the prognostication tools that I use in my day to day palliative care practice is a new form of medical imaging. We don’t have to worry about radiation exposure no X-rays are involved. You can keep all of your earrings and piercing jewellery on as there are no magnetic fields involved. It doesn’t rely on ultrasound technology either, in fact it doesn’t even need a power source. No it isn’t the latest version of Google Glass, or the latest VR/AR technology from Meta. My patients don’t need to be referred anywhere and the scan can occur on site, with no waiting list. We don’t even need anyone to review the imaging and interpret the findings. 

Not every healthcare institution is lucky enough to be as well resourced as we are. We have a special scanner which can indicate to us which patient is the most unwell in the hospice inpatient unit. A handy second opinion as prognostication is usually difficult to get right, at best it is an educated guess. We have a mobile PET scanner which makes it easier for us to assess how unwell a person is. We just need to provide it food and water, and occasional access to the local veterinarian. Yes our little CAT scanner has four legs and a tail and is named Charlie.

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Palace of Care – Prelude to A New Dawn

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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Palace of Care – Terroir

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We celebrated International Nurses Day last Thursday with a special breakfast with lots of goodies for all. Nurses are a crucial part of any palliative care and hospice team and it was great to celebrate them with some special treats. Individual paper hats were made available each adorned with little red Superman style shields, thanking them for being heroic in the jobs that they do. Special little bags of sweets were prepared and handed out to all of our staff.

There was a buzz of mirth and fun throughout our inpatient unit and this was noticed by the patients and their families too. One couple commented on it being nice to hear raucous laughter happening outside of their room. It was nice to be staying in a healthcare institution where people were enjoying each other’s company at work. This couple had stayed in many different healthcare institutions over the past years and thus spoke from experience.

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I think therefore I am? – What’s the best thing you did today?

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Sure it’s great to ease suffering of some sort be it to dampen down someone’s pain, or to improve their nausea, or to help them with their breathlessness. Taking away a negative feeling is a good thing to do. Making a bad situation less bad is a worthy thing to do.

What if you can make someone’s situation better, even momentarily? That’s what I enjoy doing the most, having a laugh with my patients. Sure they may be critically unwell and may only have days left to live but they are still human beings and still want to be treated like a person. Finding something that can make them smile or make them laugh may just let them escape for a few seconds. A short moment of enjoyment is something worthy of pursuit.

My patient was dying of recurrent aspiration pneumonia. His swallowing had been compromised for weeks. Food and drink would be aspirated into his lungs, causing life-threatening infections. Even when he didn’t eat he would choke and aspirate on his own saliva. He was constantly breathless as his illness had stopped his breathing muscles from working. This situation could not go on. The nurses asked what we should do if was to aspirate further. I said, “We’ll keep him comfortable.”

I asked him if he felt like eating or drinking anything, and encouraged him to do so. It would not make things any worse, but might give him a small amount of simple pleasure. I suggested he could have anything that he wanted to drink, including alcoholic beverages. As I was working I couldn’t join him but said that he could have one for me. Through his non-invasive positive airways pressure ventilation mask he chuckled and his whole chest shook.

He wanted to drink Coca Cola, and to eat ice-cream. I told him to go for it, hey why not make it into an ice-cream soda? It wasn’t going to hurt him, and if he enjoyed it even better.

I’d be keen to know what was the best thing you did today?

I think therefore I am? – Hello

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Working in a culturally and ethnically diverse area over the past ten years I make the effort to try to greet my patients and their families in their native language. My pronunciation may not be great to start with but I try. Even if it means looking up the greeting online before I walk in the room. How would I feel if I was admitted to a hospice in my adopted home country? What would make me feel welcome or not?

A small gesture to show that I am trying to understand you and who you are.

Here is my part of my collection of Pacific Island hellos in no particular order:

Fiji

Bula Vinaka
Namaste

Tonga

Mālō e lelei

Samoa

Talofa lava

Niue

Fakalofa ahi atu

Tuvalu

Fakatalofa atu

Tokelau

Mālo ni

Cook Islands

Kia orana

Aotearoa New Zealand

Kia ora

Australia

Gidday

I’m always keen to add to my collection if you have any suggestions.

Palace of Care – A difficult post to write

I started writing this post two years ago, and I tried to complete it this time last year but I wasn’t able to. I have finally completed it today, and it serves as a sneak preview chapter for my upcoming book Bedside Lessons which will be available for purchase on Amazon Kindle on 09 June 2022.

Photo by Sooz . on Unsplash

Death Jumps The Fence – I miss my mum

Every Friday I usually wear a fish neck-tie and chips socks, this is in honour of my parents who ran their fish and chip shop for 35 years. Friday was always the busiest day thanks to ancient papal decree. Mum loved to work in the shop and chatted to generations of families who were regular customers. Mum’s eyesight was destroyed by an autoimmune condition called Uveitis. This stopped her from driving her car that she had owned since it was brand new. A red 1982 Toyota Corona – Popularity has decreased since 2020. Not being able to drive limited Mum’s independence. Her partial blindness in one eye, and near total blindness in the other didn’t stop her working. Somehow she would still cross one of my hometown Napier’s busiest street to walk to the shop. She loved serving her customers and always had a friendly smile for them. Apart from rheumatoid arthritis and a blood disorder, Mum’s health was good until her final illness.

It all started early one morning, when severe back pain woke Mum up. She was rushed to hospital and couldn’t move her left leg. The initial differential diagnosis was of a stroke but the head scan did not reveal any brain issues. Further tests discovered a blood clot which had blocked the spinal artery which supplied the area of spinal cord controlling the left leg. Mum had been troubled by a blood disorder for the previous five years. This led to her blood being thicker than usual, which may have caused the clot formation. Blood thinning medication was started. Other tests discovered a suspicious mass lesion in her chest. A biopsy was requested.

Whilst awaiting the biopsy Mum was reviewed by a lung doctor who bluntly told her that she had cancer, and that she would need to have intensive treatments. These would need to be done at the regional cancer therapy centre, two hours drive away. This sent my Mum, who was always a bit anxious, into a tailspin. She stopped eating, couldn’t sleep, and was inconsolable.
Mum had a good memory throughout her life, but in the months prior to this illness she had started having short term memory loss. Looking back at this her illness had likely taken its toll on her memory. Two days after the bluntly delivered unconfirmed diagnosis Mum had forgotten what had been said, and was able to continue her recuperation. She knew that a biopsy had been arranged but could not remember what for. The prospect of it terrified her.

I flew back to Napier on a Friday morning to help Mum get through her biopsy. She was scared and needed her hand held. The radiology team who were performing the biopsy ushered me in the room, and I gently told Mum to take deep breaths. I explained to her in Mandarin Chinese, “There will be some pain from an injection. Then your skin will go numb. They’re about to put in another needle. It shouldn’t hurt, let me know if it does. There will be some pressure but it shouldn’t hurt.”

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I think therefore I am? – SEP

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Ford Prefect says, “An SEP is something we can’t see, or don’t see, or our brain doesn’t let us see, because we think that it’s somebody else’s problem. That’s what SEP means. Somebody Else’s Problem. The brain just edits it out, it’s like a blind spot.”

The Somebody Else’s Problem field… relies on people’s natural predisposition not to see anything they don’t want to, weren’t expecting, or can’t explain.

From Douglas Adams’ Life, The Universe and Everything 1982

The SEP field generator is an incredible thing, where-ever you shine the beam, like an amazing piece of magic, suddenly the problem disappears and becomes someone else’s problem.

Sound familiar when you think of palliative care patients and their problems?

Other specialities do this to us all of the time, they leave work unfinished or not even attempted. They somehow know that us good-natured folks will make sure that things are sorted.

This isn’t really fair to us, but especially unfair to the patient. Where is the patient in all of this? Certainly not in the centre of attention.

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Palace of Care – 5. Down – The Primal Scream

Photo by Nsey Benajah on Unsplash

We talked and he looked to be in pain, not physical but emotional/spiritual/social pain. He wanted to stay at home with his family but he knew that it was becoming too much to handle for them all. The boys are still young, his partner has a significant health issue. He wanted to be at home but was worried that caring for him would put her under too much strain, she had already had a close call.

Usually the fire of anger was what he would allow to erupt, but instead he let out his desolation. His weak voice did not allow him to scream very loudly but he did so for five minutes. A raw primal scream from deep within his soul like a deeply wounded animal. Utter devastation unleashed as a whimper. The disease that had ravaged his body, only allowed a small strangled noise to come out.

We did not try to soothe him, and would’ve been lying to say that it was going to be all right. “Let it all out, you need to let it all out.” Tears were streaming down his face, into his beard, but he no longer had the hand or arm strength to wipe them away. We didn’t move, he needed this moment of catharsis, he needed this time to let out his deeply buried emotion.

He stopped screaming and started apologising, we said that there was no need to. We could see that what he had needed was to let it out, and we had allowed it to happen.

“I feel better.”
“I thought you would.”
“Thanks.”
“No worries bro, we’re good, let’s make a plan to get you home, but you need to have help, otherwise nothing will work. “