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.
It was a day like any other. He woke up and was helped by the staff out of bed. Breakfast was served, it was the usual porridge, toast and jam. Finished off with a nice cup of tea. The next part of the routine involved having a shower which would take half an hour. Nothing out of the normal at all. His wife would be coming to visit for morning tea, they would read the paper together. See what was going on in the world. The same routine they had followed over many months.
Everything changed when his hand started twitching. You had to really look to notice it, and it would be gone within seconds. When this happened his face looked as if all expression had been wiped away by a whiteboard eraser. Blank. More of these episodes occurred but only some were noticed by the busy care home staff. One registered nurse supervising the care of 20 to 40 patients was the norm for the industry. In recent months it was up to 60 patients, and the staff had trouble attending to their residents’ routine care, let alone anything out of the ordinary.
The care assistant noticed the patient’s body stiffening, his right arm clenched too tight to not be painful, a pained expression on his otherwise blank face. He did not respond to voice. The arm clenching lasted for a minute and was followed by violent shaking of his right arm and leg. The bedsheets became wet. The jerks lasted for two minutes at which point the patient awoke. He was disorientated and had no memory of what had happened. The on-call doctor had been called to review the patient, but would not be available until the afternoon. Whilst awaiting the doctor’s visit two further seizures were witnessed and the patient was sent to the hospital.
What followed were long weeks of assessments by many different specialist doctors. Many scans and invasive procedures looked for a cause for the seizures. Treatments were started to try to control the seizures. One medication was started, then another, and another but the seizures persisted, as the patient’s consciousness levels desisted. The local experts were called in and gave their opinions. The brain scans revealed worsening of a ‘benign’ brain tumour – benign meaning not spreading but as we saw in this case, not a benign outcome. Despite all efforts, the seizures and worsening consciousness levels worsened.
Serious conversations about end-of-life were held and it was decided to keep him comfortable as none of the treatments had worked. They had tube-fed him but he kept pulling out the uncomfortable tube which went through his nostril into his stomach. Palliative care advice was sought and an infusion was started to replace medications that could no longer be given to him including the three anti-seizure medications in combination.
Finally, an infusion was started and controlled the seizures. The hospital teams expected the patient would die soon. Everyone was surprised when he woke up and talked for the first time in weeks.
“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.”
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.”
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.
“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.”
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.
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