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 – 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 – Apology

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“Ma’am if I had known that your husband would die within three days I wouldn’t have sent him anywhere. I would’ve kept him in hospice and looked after him. I’m sorry we decided to transfer him as we thought he still had weeks left to live.”

“It was hard to understand after all he’d done for hospice.”

“I am so sorry, I wish I could’ve known exactly how long he had left. We could only make the best decision we could with the information we had at the time.”

“We found a place for him and they admitted him into the hospital section. They didn’t have a bed for him, only a mattress on the floor. He went in on Friday, and he died on Monday, still on the floor. A horrible place. I’m not surprised they are not doing well.”

“I’m very sorry.”

“It’s not your fault.”

“He was a lovely man. During his first admission, I thanked him for what he had done for hospice.”

“He was the loveliest man. He wanted to help out our community.”

“He certainly did that. Thank you for your ongoing support over the many years.”

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 – Singing Together

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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

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.”