Author Archives: James

Palace of Care – Singing Together

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Photo by Haley Rivera on Unsplash

His grandmother had never learnt English, and all conversations at home were in the indigenous language. At home, he also learnt another language, the language of song. He was one of the guitar players and could sing traditional songs in their language. It was important to pass on his culture and he became a teacher, passing on his knowledge to the next generations. His ethos was full integration, two cultures living together in harmony. That’s how he raised his children, and to provide for them, he moved overseas in pursuit of a better income.

He missed his home and he craved being able to talk in his grandmother tongue. He would visit his cousins as often as he could. Grandmother’s rules applied and only their native language would be spoken in their home. He had to translate for his wife to understand the jokes and conversations. His family ended up in both countries, and during any reunion, the guitars would come out and the favourite songs would be sung together.

The songs kept him going during the first cancer. The treatments were rough, but he completed them, and they worked. Things were different with the second bout of cancer. Nothing went well. The cruellest thing of all was the cancer’s effect on his swallowing and voice. Two of the things he loved the most were taken away from him. He couldn’t eat his favourite foods, and he couldn’t sing his favourite songs. More and more bad news from the doctors. They told him time was short, that there were no treatments left. He told them he wanted to go home, that he wanted to be with his family for the end of his life. The team wasn’t sure if he was well enough to make the trip but prepared for it anyway.

He couldn’t sleep the night before the flight home, he was too excited. He didn’t sleep on the plane. There were various delays which meant he didn’t arrive at the hospice until late evening. He was pleasantly surprised by the staff greeting him in his language. The family visited and they celebrated his safe return. He was exhausted but the thrill of being together with his family in their home country kept him awake into the early hours of the next morning.

He met the rest of the medical team the next day, and they used more words from his language. They invited him to their singing practice scheduled for the following morning at 9.15 am. They all looked surprised when he turned up sitting in his wheelchair. The assembled staff was like a United Nations assembly. Though they were all of different ethnic origins to him, they were singing songs in his language. His family joined in the singing, and then he gave his critique. “A+ for effort, just need more practice with some of the songs. It’d be better with a guitar, I’ll get my daughter to play next time.”

They made him comfortable and kept things as simple as possible. He went home to his family after joining the following week’s singing practice, this time accompanied by guitar playing. The hospice held his bed for longer than usual, but his family looked after him well and he didn’t need to go back. Generations of family and old friends visited him with their music and laughter.

The pain worsened, and he was worried that he was about to die. He wanted to go back to the hospice, he trusted that they would make him more comfortable. His family attended the weekly singing practice and were encouraged to play their guitar and sing even more. Beautiful harmonies were heard from his room in the afternoon. His family surrounded him with love and the last thing he ever heard was the harmony of them singing to him, “The Lord’s Prayer.”

Palace of Care – Exit Song

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They were supposed to be touring Europe at this time of the year. The tickets had been booked and a deposit had been paid for before the first bout of illness. After he had recovered from it they sought medical advice on whether or not to travel.

“It’s likely to never happen again. Stick with your travel plans.”

After much consideration, they decided to cancel their trip. Their deposit was lost but they felt they couldn’t risk him becoming unwell overseas.

Five weeks later their decision proved itself to be the right one. His illness recurred and MRI scanning revealed a likely brain tumour. Plans were made to take a biopsy, but this was thought to be too dangerous to attempt due to breathing issues. The Oncologist reviewed all the results and the decision was made that treatment would not be helpful and that they should prepare for his death.

It was the worst possible news but they took it on board with their usual pragmatism. They wanted to be prepared and started planning his funeral. They chose the funeral director, it wouldn’t be a religious service but the choice of music was important. He had always loved singing along to his favourites. It had to be the right song for him. They wanted something which would fit with his views on life and death. Something that resonated with him.

They had in mind Judy Garland’s version of “Somewhere Over The Rainbow.” They were discussing the song choice with the hospice doctor when she suddenly pointed at the wall.

“Look, over there.”

Outside of the room, hung from the skylight window, were several crystals. Somehow through a wonder of reflection and refraction, a rainbow was being projected onto the wall of his hospice room. They had chosen the right song.

He sang along to the song as it was played. The mobile phone owner described herself as, “too pragmatic to cry.” Tears streamed down his cheeks, as he wondered if he would be granted his dying wish.

Palace of Care – Be Prepared

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We didn’t want him to have any surprises.

We thought his wife was dying and we needed to prepare him.

We weren’t the only ones who had done this.

We heard the Oncologist had told them she would only have three months left to live, but that had been five months ago.

We thought she would die six weeks ago when her mind became less clear, so we prepared her husband for death within days. The same afternoon she went out shopping for furniture.

We thought she would die four weeks ago, again her mind had become less clear, so we prepared her husband for death within days. The next day she went out shopping for clothes for the children.

Two weeks ago she thought she was about to die, and we agreed. She fell asleep and we thought she wouldn’t be waking up again. Again we prepared her husband for death within days. Two days later she woke up and wanted to eat something.

At the end of last week, she thought she was about to die, and asked her husband to bring the children in. We thought this time she had to be right and prepared for her death. Somehow she carried on but became less conscious over the rest of the week.

Her husband had thought he had prepared himself and the children as well as he could.

He thought she was sleeping, but the nurses who came in for the routine check and bed turn found that she had died.

Everyone had been prepared for her death but when it happened it still hit hard. The brains were ready but the emotional hearts are always slower.

For almost six months we had worked on connecting with our patient in order to help her. We had listened, negotiated and flexed in order to earn her trust. The sudden disconnection took us all by surprise as the strong one had finally completed her long final journey. Off to a better place with no more suffering.

Rest in peace Dear Patient. Safe travels.

Back to plain boring fingernails.

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 – View from Four Feet

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The little boy looked sad. He didn’t say much. Did he actually know what was going on? He had visited hospice many times over the last months. His father would bring the children in after school. It was important to his mother that the children stick to their routines as much as possible. Education was one of the most highly valued things in life for this family.

The staff would print out colouring pages for him to work on. Superheroes were his favourite. He had coloured in Spider-Man pages over the last few visits and the pictures had been stuck to his mother’s room’s wall.

Today he wanted to colour in a picture using his mother’s favourite colour – Yellow. He asked the nurses if they could give him a “Golden Iron Man picture.” The nurses grabbed the activity trolley with art supplies and children’s games. There were some colouring pages but no Iron Man was present.

He went in to see his mother. She looked tired and kept on falling asleep. He knew she was unwell. She had been staying at the hospice for weeks. She used to come home to spend time with the family, but she had not been home for over a week. He missed his mother and the games she would play with them. They were supposed to go for an overseas trip but that had been cancelled. Mum could no longer leave the bed. She was always in pyjamas these days. She used to take them shopping with her. Fun times. It was all so different now.

Their home was different, without mum at home. When would she be coming home? He really missed her. Had he done something to make her not want to come home?

Palace of Care – Fade to Yellow

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In the last days of her life, she was visited by close friends and family members. She conversed with them and still shared her sense of humour with them. To some of her oldest friends, she said her final goodbyes.

One of her best friends asked me if it would be okay for her to have some champagne. I said I would allow it but she wasn’t allowed to drink alone. He went off to buy some. It had to be Tattinger Champagne, nothing else would do. I said she could eat whatever she felt like. A question was asked about cigarettes and again I had no objections. She was dying and she could do whatever she liked that would bring her some pleasure and normality.

“How can you tell that time is short?”

“She’s been deteriorating every day. She has become unclear in her thinking and is needing to sleep more. These are all signs that death is coming soon.”

“How long do you think she has got left?”

“A few days ago we thought she might only have days to weeks left to live. Now I think she only has hours to days left. She could die at any time.”

“Who do you think can come and visit her.”

“I’d recommend only immediate family only and her closest friends. Whomever she wants to see.”

“Will you let our brother know?”

“Sure, we’ll make contact with him.”

The next day four members of the hospice clinical team painted their nails yellow and orange to match their patient’s fingernails. When she woke up she was shown the photos and she was able to enjoy the yellow-clad doctor’s finger and toenails which were all highlighted in bright yellow. The nails gave her and the family something to smile and laugh about in between the tears.

The next morning the Polish team, who were not from Poland, were about to go into the room when the nurse came out to ask the family to come in urgently.

“She’s about to take her last breath.”

The clinicians made way for the family.

She died with the voices of her family telling her how much they loved her.

Palace of Care – Yella Fella

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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.

Palace of Care – Yellow Fever

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She had told her family about my promise to paint my fingernails to match hers. She had painted her nails to match my bright yellow scrubs. When I examined her fingers the nails were of many different colours. Some were yellow, others were black, pink, and red, all of them nicely painted. She showed her nails and she made us all laugh. This included both staff and her own family. I joked about needing help with nail-painting supplies, as I didn’t usually paint my nails. If I was going to do so then I might as well do my toenails. I shared with our audience that my yellow nails would go down well at the Brazilian Jiu-Jitsu club I belong to. We all shared some more laughs before we came to the serious part of the family meeting.

I provided a recap of what had happened since our patient was admitted. She arrived with terrible pain, nausea and constipation. These symptoms were controlled with adjustments in medication doses over the first week. Well-controlled pain came at a cost. Our patient became confused at times. We had to make dose changes but we wanted to persevere and bring down the pain levels as much as possible.

Overall the pain and nausea improved but the confusion episodes worsened. We tried to prevent further episodes to no avail. I talked about the ongoing changes in her situation. Old problems became worse while new problems developed. We were trying to play catch up with a disease process that wouldn’t stay still. She had been having ups and downs due to medication effects but mostly due to worsening cancer.

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Palace of Care – Roller-Coaster Ride

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He had loved his last job and had done well until the stroke. A bolt of lightning had struck him down and rendered one side of his body paralysed. His mind was still intact and his will was strong which allowed him to recover well over the next months. He needed to walk with walking aids and had severe fatigue but he adjusted to his debilitated life. Speaking and writing were still effective forms of communication. Life was different but the strongest organ in his body still functioned well – his brain worked as well as ever.

He had lost the use of his legs earlier in the year. Nothing out of the ordinary had happened before they stopped working. It was thought to be due to a late side-effect of the life-saving radiotherapy he had received decades ago, which had helped to cure the cancer that almost killed him. He hadn’t been out of bed since then without great difficulty. He could not move his legs but the sensory nerves were intact. He was able to cope with the further disability until the pains started. It was a cruel combination, his legs were unable to move but were able to feel nerve-related pain. By the time I visited him at home the pain had been worsening over the past weeks. His medications which included nerve pain agents were not working. The strong opioids we had advised him to have were not controlling his pain but clouded his brain.

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Palace of Care – What She Said at Lunch

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Life over the past two years had become chaotic and uncertain, but she was certain that the gathered guests were there for a good cause. She thanked the crowd for spending their time at the hospice fundraising lunch. In New Zealand there are over 27000 registered charities and on this day hundreds of people had chosen to be there to raise money for the hospice. She thanked the sponsors and donors for their generous gifts and support. She told them that hospice couldn’t do what they do without their help.

She didn’t know what hospice was about until three years after her mother’s death. She cradled her mother in her arms as she became heavier and heavier, and as she took her last breaths. Although she was flooded with deep sadness, relief was the dominant feeling. Relief from her mother not suffering any longer. The night before her mother died she decided to chase her dream to become an Olympian. On arrival at the hospice they could feel the care and love surrounding them. When her mother was transferred to the hospice she was able to sleep in a La-Z-Boy instead of the hard-tiled floor of the hospital.

Yesterday morning she thought she would not survive long enough to speak at the hospice fundraising event this afternoon. She had to bring her oxygen bottle to be able to attend. She shared with the audience her own experiences of hospice, and how they had helped her make life more bearable. She talked about the friends she had made at the hospice’s living well centre. There was one friend in particular who she missed the most. The final contact they had with each other was when her friend was in the hospital. The hospice group of friends had sent their friend best wishes via a group photo, which was much appreciated. Unfortunately, their friend died the next day. A reminder of how precarious life is when you are dying.