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.
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.
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.
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.
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.
This was a first for me in my 23 year medical career. My patient’s family requested we write a letter to be read out at the funeral.
To our dear patient and their lovely family,
Thank you for allowing us the privilege of looking after you.
We know to start with you were scared of hospice and were not keen to be under our care.
You changed your mind once you met us. Our whole team enjoyed getting to know you and your caring family.
We are glad we could help you feel more comfortable, as we could see you had suffered a lot, as had your family who witnessed your suffering.
Your family had looked after you so well at home and that’s why you were able to make it to your 80th birthday. It was a testament to the loving care they provided to you.
Thank you for allowing us to look after you in your final days.
You were so unwell but we were so glad to share smiles and laughter with you and your family during your time in our inpatient unit.
Your friends and family will miss talking with you and hearing you sing, but everyone is glad you do not have to suffer any longer.
It was our pleasure to look after you and your family. That’s why hospice is here, to look after people just like you and me in the community.
I started the day leading our Waiata Group. We gather together to sing songs once a week. My shy introverted younger self would never have imagined doing this as an adult. Public speaking is one thing, but Public Singing is a whole other level of stage fright. Feel the fear and do it anyway. You’re probably wondering why a Chinese guy was leading everyone in singing songs in Te Reo Māori I did it because someone has to and I think it is an important thing to do. We had various members of our teams, from clinical and non-clinical departments, joining in song. None of us was actually of Māori descent. Today we were joined by three special tangata whenua guests. One of our Māori patients and their whānau joined us singing:
We were not pitch perfect and our Spotify playlist still needs some work. That was not the point though, we were there to learn and to culturally connect. The smiles in the room spilled out into our main corridor, and people passing through were disappointed to have arrived at the end of our 15 minutes of fun and fame.
A few minutes later I noticed a Superman shield tattoo on another patient’s hand. We ended up talking about Superman and his greatest weakness Kryptonite. The supervillain we were trying to defeat was Mamahi-Man who had caused severe pain over too many long weeks. I hoped that my medications would lead to Mamahi-Man’s downfall. I also asked about the stories behind the other tattoos on his knuckles. He said they had been chosen by each of his children, and each one represented other superheroes. Mamahi-Man doesn’t stand a chance when we have the whole Justice League/Marvel Cinematic Universe and many others on our side.
People are always talking about being free and independent – kids want their own car and house so they are independent and free from their parents, people want their country to be independent and free from unwanted rulers. But nobody is free and independent.
Who really has control over themselves? We don’t have control over anything, not just external things, but even our own mind. We can’t control what feelings and thoughts we have from one moment to the next. And when these thoughts and feelings come, we are completely carried away by them and our life becomes like a roller coaster.
Modern technology makes everything faster, which in one way is good as we have access to more things, but in another way, the roller coaster of our emotions becomes much faster. For example, previously people exchanged letters by mail which took days or weeks, but now people exchange emails and text messages almost instantly.
We have no control and are totally dependent on conditions. For example, being in a relationship, if you talk to him or her every night and then one night you call and there is no answer, then you start to have all sorts of thoughts and emotions.
But if you have mindfulness and awareness of how you are dependent on causes and conditions then no matter what happens you won’t get completely lost or carried away.
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.”
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