Palace of Care – Second Languages

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They had lived in New Zealand for many years and could speak English as their third language. Their English was pretty good but they did not feel confident when discussing medical issues with healthcare staff. Their children had grown up here but were busy with work. One child worked in NZ, the other child was overseas. Thanks to time zone differences, their overseas child would sometimes be available to help with translation during our patient’s clinic appointments. The patient and their spouse didn’t want to risk any misunderstandings when it came to discussing medications and treatment plans.

We had offered them a virtual appointment but they wanted to come in person. Face to face it was easier to communicate even with masks on. I greeted them in our shared second language, Mandarin Chinese. This made them feel at ease right away. They felt they would be able to communicate better with me. They had come for a pain review and I was able to quickly assess our patient. Our patient would be seeing their Oncologist the next day. I provided them with written instructions and also wrote a note to the Oncologist asking them for advice about another problem they had mentioned to me.

The communication was by no means perfect as my Mandarin is not 100% fluent, especially when talking about medical issues. I had to use occasional English words interspersed between paragraphs of Mandarin but we were able to understand each other well in terms of language and also cultural expectations. They were pleased to meet our pharmacist who could also speak Mandarin.

It felt good that our diversity and inclusion recruitment programme was making a difference. Our effort to reflect our demographic continues to be beneficial and is another patient-centric point of difference in the services we provide. We are doing better than before and will continue to keep trying to make our ability to connect better.

I think therefore I am? – Masks

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Medical masks have become part of daily life in hospice and palliative care units all over the world over the past three years. We have had to get used to having important conversations with most of our faces covered. Compassionate expressions have had to be conveyed with the aid of eyebrows and hands. Smiles have been with eyes only rather than with the full face.

There are a number of workmates I have worked with for two years or more, with which we have never seen each other’s faces. I removed my mask in order to be heard more clearly during a family meeting the other day and my patient who had known me for eight months saw my whole face for the first time. There are young children who have only known people outside of their own families to wear masks most of the time. Things are changing with the easing of COVID restrictions but for the healthcare workforce, it will be a while yet until we can take off our masks for good.

A barrier to viruses can also serve as a barrier to communication. People who have hearing impairments cannot lip-read if other people’s mouths are completely covered. There has been less transmission of yawns. Apparently, if you are more empathetic and you see someone else yawn, it can trigger a yawn of your own.

On the other side of the mask is that there are many choices of masks that people can choose to wear. Maybe it has allowed people to show more clearly what fashions they want to show off. People can show their membership in groups with the type of mask they wear. They don’t just have to be the same old boring surgical light blue but can be any colour of the rainbow.

Has it become easier for people to mask their intentions? What else is being hidden? What else is being left unshared? Kisses are left unblown. We are now more familiar with the smell of our own breath than ever before. What else has been lost since we have been wearing masks? Will we ever get those things back?

Palace of Care – Whoa Part 2

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I was surprised that a benzodiazepine subcutaneous infusion had not been started. Despite three anti-seizure medications being used, the seizures continued.

I was surprised to receive the referral for a hospice inpatient admission as I thought the patient would’ve died a week ago.

My team was surprised that the patient could be easily roused. He had been talking to his wife and had been eating small amounts of food.

The admitting doctor was surprised when the patient said, “I see another man in the room.”

“Is it someone you know?”

“Yes, it’s Robert.”

The doctor had to pick his jaw off the floor.

Someone named Robert had died in the same room, on the same bed, only days ago.

We were even more surprised when the patient’s wife said that the late Robert had been her husband’s good friend. They had worked together for many years and had spent a lot of time with each other. When we heard this chills ran down our spines.

The idea that Robert had visited brought comfort to the patient and his wife.

Our patient joined his friend Robert on the other side only days later.

Palace of Care – Struggle

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“You’re really breathless.”

“Yeah. I’m. Trying. To. Calm. Down.”

“Hard to swallow too?”

Nod.

“You’re working hard to breathe. You’re having to shrug your shoulders up.”

“Yeah, Mum’s like that in the morning. She’s better in the afternoon.”

“I’m seeing quite a difference in Mum since I last saw you both a few days ago. I’m worried about her. I think we need to put a hold on the discharge plan. We need to calm things down first.”

“Okay.”

“Are you okay staying with us a bit longer?”

Nod. “I. Love. This. Place.”

“We’ll see how you go, one day at a time. If things become stable then we can talk about going home again. If things get worse, it might be better to stay here.”

Nod.

“No matter what happens we want to get you more comfortable, and let your daughter have a bit more rest.”

“Thanks. Mike.”

“You’re welcome.”

Palace of Care – ZZZZZ

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“How was your sleep last night?”

“It’s the best sleep I’ve had for ten years.”

“Really? Even better than before you became sick?”

“Yeah, I’ve had trouble sleeping for a long time. It got much worse since I became sick.”

“You’ve had trouble falling asleep?”

“Yeah, that’s when I panic, at bedtime. I worry about not being able to fall asleep. Then my breathing gets worse too.”

“Your breathing wakes you up?”

“Yeah, I only sleep for ten minutes to an hour. I wake up thinking it is already 5.30 a.m. Then I see it is only 1.30 a.m.”

“The nights must be long.”

“Yeah, but the last few nights have been better.”

“Since you started the medications?”

“Yeah, I think it is helping.”

“How about the panic attacks?”

“I still have some, but not as many, and not as bad as before.”

“That’s good, I’m going to adjust the medication a bit higher.”

“Okay, I am feeling much better than when I came in. Thanks, Doctor.”

“I’m glad you are more comfortable. We’ll take things one day at a time.”

“That’s good, I feel safe here in the hospice.”

Palace of Care – I’m in charge now

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She had become sleepier over the course of the week. She would still rouse to voice at times. Her eyes would open for a few seconds and then close again. A few days ago she was still talking but her voice became weaker as the days passed. It was becoming harder to understand her and then she stopped talking.

She had been unresponsive two days ago and would only make occasional sounds when being washed or turned in bed. This is what happens as a person dies, they become less able to communicate. She had gone into a coma.

We encourage people to say what they need to their unconscious loved ones.

“They can hear you and understand you. They will try and respond but may not be able to do so anymore. Tell them what you need to.”

The nurse was talking to the husband about who the patient had wanted around.

“She wanted her friend to come and visit.”

“I think she is too unwell now, I don’t think she should come over.”

“But she specifically had asked for her to come.”

“Doesn’t matter. I’m in charge now.”

Immediately from the bed came two sharp coughs.

A phone call was then made and the friend visited later in the morning.

Palace of Care – Colour Commentary

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I heard the loud and proud singing from the carpark. The vibrant and powerful voices of the Gospel Choir required no amplification. Their harmonies stirred even the singers to tears, let alone their audience.

We were all gathered to celebrate a life and to say goodbye. In my 23 years of medical practice, I had previously been to only one patient’s funeral. This was number two.

The husband had requested that we all wore black. I wore a dark suit, a white shirt and a tie with yellow smiley emojis. Partially hidden under dark coats were yellow and other colourful dresses. Vivid scarves provided obvious contrast to otherwise fully black outfits. Yellow earrings dangled from the ear lobes of some of the ladies. The young men wore black, apart from their highly decorated sneakers.

We all stood up and the room quietened as the pallbearers carried the gleaming yellow coffin with loving care.

I looked through the window at the front of the room and I noticed a small yellow feathered bird frolicking in the bubbling waters of the spherical fountain.

It was lovely to hear about our patient’s rich life from friends, workmates and family members. In Palliative Care/Hospice we only meet people when they are very unwell. We often don’t know what they were like before their illness changed every thing.

I had been asked to talk on behalf of our hospice. I talked about the strongest patient I had ever met in my fifteen years of palliative care. Someone who had surprised me with her resilience. She made me negotiate every change in medication over the past six months. I talked about when I thought she was about to fall asleep for the last time and then hours later she went out to the shopping mall.

She had wanted to buy the piece of furniture for her living room for some years, but she had been too busy. Working, caring for her family, entertaining friends, and living a full life. Then the illness and its treatments had taken over her calendar appointments. In her last weeks, she had filled in the last remaining space in her living room, the seat was upholstered, of course, in yellow.

Education was always so important, she didn’t want the kids to miss out on school. As many children were present for her funeral, a science lesson was shared about Mitochondria.

I talked about when she saw my yellow scrubs for the first time. She smiled and laughed before changing her outfit. She had asked her friend to take a photo of us in our yellow outfits. Both of us also wore matching socks.

In her final weeks, I had worn my yellow scrubs more often. Each day I thought it might be the last time she would see them. I told her again that whenever I wear my yellow scrubs in the future I would think of her.

The photos always get me. The montage accompanied by a heartbreaking song, showed happier and much healthier times. A younger couple with tiny toddlers in photos taken from various holiday trips in exotic locations. The pictures of the beautiful family, with the rest of their lives together to look forward to, deepened the ache of the afternoon gathering.

We all stood up as the six men took their places at the side of the sacred yellow vessel. They took their sombre steps out to the waiting hearse. We followed them outside and were offered white petals with which to say our final goodbyes.

Yellow balloons were released by her tuxedo and formal dress adorned children. Goodbye Mummy.

The sturdy videographer raised his arms in order to capture the right shot. The too-pale skin of his ample abdomen blinded us previously innocent bystanders. Captain Ahab would’ve been driven into a frenzy. We closed our eyes but a dark-coloured island continent was burned into our retinae. Thankfully we had not glimpsed Tasmania.

She would not have approved of his shirt not being tucked in and would’ve had a few choice words to share with him, in a polite but forthright manner.

We waved goodbye as the hearse rounded the corner.

Safe journey my dear.

Palace of Care – How are you?

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How are you?

I’m terrible.

What’s troubling you?

Everything.

You’ve had enough haven’t you?

That’s right.

We’re not going to do anything to extend your life.

Thumbs Up.

We are going to work on your pain and nausea. Make you comfortable.

Thumbs Up.

It might make you sleepy.

Double Thumbs Up.

Would you like us to help you shave?

No, that’s a job to leave to the undertaker.

You haven’t lost your sense of humour.

No, that’s something I’ll never lose.

Palace of Care – Songs of Gratitude and Connection

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This morning’s Waiata Singing Practice was special. Our team were joined by three generations of our late patient’s whānau/family who returned to the hospice a week after his death. We all crammed into the big patient lounge which has a view of the local park through the windows.

The whānau sang original songs that had been composed by our late patient, their husband/brother/father/father-in-law/grandfather. A man of musical and poetical talent who had shared his knowledge with his children and the many other schoolchildren he had taught.

His songs were written in a combination of Te Reo Māori and English. Integration of the different cultures had always been on this songwriter’s mind. He had led by example and his family did him proud this morning. They sang from their hearts and channelled his voice.

They shared with us precious gifts this morning with their spine-tingling renditions of beloved family songs. The beautiful whānau harmony uplifted us all. Even the most battle-hardened palliative care physicians were overcome by a sudden attack of hay fever.

They thanked us for the care we had provided to their loved one and their whānau members. “His wairua/spirit felt cared for here, that’s why he wanted to come back at the end.”

We thanked them for allowing us the privilege of looking after their loved one.

Our connection was further affirmed when both the whānau and our gathered staff sang a final waiata together, Purea Nei.

We promised to meet again.

Palace of Care – Yella Fella

I’ve never had my fingernails painted before. Today was full of new experiences. I didn’t plan the beauty session well. While my fingernails were drying, I took off my shoes and socks. I then painted my toenails. Two coats were applied as I tried my best to colour within the lines. I hadn’t brought any open-toed footwear and I didn’t want to walk around barefoot in our inpatient unit. I thought up an inelegant solution involving the desk chair on wheels I was seated on. If I planted my feet on the lower supports and then if I shifted my body forward I could slowly propel myself at a top speed of 1 cm per second. This could make for a long morning ward round.

My colleague took matters into his own hands and wheeled me down the corridor to see our patients. I wore my yellow scrubs with a yellow mask. My finger and toenails were painted yellow. If I was a soft drink I would be called Mello Yello. If I was a dog I would respond to Ol’ Yeller. My colleagues had joined in the fun and had painted their fingernails mostly yellow as well. Another colleague had worn yellow shoes. All of us travelling down the corridor briskly reminded me of the Yellow River. Our patient who had barely been conscious the other day expressed concern as to what our spouses would think of our coloured nails.

We toured the ward in a formation reminiscent of a ribbon around an old oak tree. As we reached the end of our jaundiced journey we knocked on the door of our inspirational patient’s room. Her family members were impressed by the shiny brightness of our polished nails. Smiles and laughter made their way through the room. Smartphone cameras clicked and the noise did not disturb the sleep of our patient at all. She was fast asleep and we were not able to wake her. The family took photos to show her later.

I was called back in later in the morning once our patient had woken up. As my toenails had finally dried I walked over myself. I showed off my yellow banana socks as I took them off to reveal my matching toe and fingernails to my patient. She smiled and laughed. Mission Accomplished.

She received some visitors from her workplace later in the day. I was told that her male colleagues had also painted their nails in solidarity with our patient and were going back to the office to solidify the support campaign.

Better stock up on the yellow nail polish, as there is about to be a worldwide shortage.